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University of Calgary PRISM: University of Calgary's Digital Repository Graduate Studies The Vault: Electronic Theses and Dissertations 2014-01-29 Development and Validation of the Quality of Trauma Care Patient-Reported Experience Measure Bobrovitz, Niklas Bobrovitz, N. (2014). Development and Validation of the Quality of Trauma Care Patient-Reported Experience Measure (Unpublished master's thesis). University of Calgary, Calgary, AB. doi:10.11575/PRISM/25649 http://hdl.handle.net/11023/1322 master thesis University of Calgary graduate students retain copyright ownership and moral rights for their thesis. You may use this material in any way that is permitted by the Copyright Act or through licensing that has been assigned to the document. For uses that are not allowable under copyright legislation or licensing, you are required to seek permission. Downloaded from PRISM: https://prism.ucalgary.ca

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University of Calgary

PRISM: University of Calgary's Digital Repository

Graduate Studies The Vault: Electronic Theses and Dissertations

2014-01-29

Development and Validation of the Quality of Trauma

Care Patient-Reported Experience Measure

Bobrovitz, Niklas

Bobrovitz, N. (2014). Development and Validation of the Quality of Trauma Care Patient-Reported

Experience Measure (Unpublished master's thesis). University of Calgary, Calgary, AB.

doi:10.11575/PRISM/25649

http://hdl.handle.net/11023/1322

master thesis

University of Calgary graduate students retain copyright ownership and moral rights for their

thesis. You may use this material in any way that is permitted by the Copyright Act or through

licensing that has been assigned to the document. For uses that are not allowable under

copyright legislation or licensing, you are required to seek permission.

Downloaded from PRISM: https://prism.ucalgary.ca

!

UNIVERSITY OF CALGARY

Development and Validation of the Quality of Trauma Care

Patient-Reported Experience Measure

by

Niklas Bobrovitz

A THESIS

SUBMITTED TO THE FACULTY OF GRADUATE STUDIES

IN PARTIAL FULFILMENT OF THE REQUIREMENTS FOR THE

DEGREE OF MASTER OF SCIENCE

DEPARTMENT OF COMMUNITY HEALTH SCIENCES

CALGARY, ALBERTA

JANUARY, 2014

© Niklas Bobrovitz 2014

!ii!

Abstract

To deliver patient-centered injury care, patient perspectives must be incorporated into quality

measurement and improvement. Therefore, the purpose of this thesis was to develop and validate

a measure of patient experience for use as a quality improvement tool in injury care.

A draft survey measure of patient injury care experience was revised using cognitive interviews

with 30 injury patients/surrogates. A multi-site prospective cohort study of 400

patients/surrogates was conducted and provided evidence of the measure's validity, reliability,

and feasibility of implementation. Analysis of responses to the free-text items on the measure

indicated that qualitative data obtained from open-ended items may be a valuable supplement to

the quantitative component of the measure.

The results of this thesis show that the Quality of Trauma Care Patient-Reported Experience

Measure (QTAC-PREM) is valid and reliable and could be used as a tool to guide quality

improvement efforts.

!iii!

Acknowledgements

I would like to thank my supervisory committee (Dr. Tom Stelfox, Dr. Maria Santana, Dr. John

Kortbeek, and Dr. Theresa Kline) for all their guidance and support during my graduate studies.

I want to bring attention to the support and efforts of the following people:

Jamie Boyd and Dr. Mauricio Ferri for volunteering their time to act as reviewers/coders for the

completion of the qualitative study;

Dr. Kevin Martin, Theresa Pasquotti, Dr. Sandy Widder, and Heather Allen for recruiting

patients in Lethbridge and Edmonton;

Sue-Ann Nodder, Rachel Burton, Christine Vis, and the staff on Unit 44 at Foothills Medical

Centre for supporting the study and helping me recruit patients;

Michelle Meracdo for providing patient data from the trauma registry;

Dr. Peter Faris for providing guidance on statistical analysis.

I also want to thank Alberta Innovates Health Solutions, the Health Quality Council of Alberta,

and the International Society for Quality of Life Research for providing funding to support my

research.

Finally, I want to thank my mum (Jennifer), dad (Gary), and sister (Tasha) for supporting me

through thick and thin.

!iv!

Table of Contents

Abstract............................................................................................................................................ii

Acknowledgements........................................................................................................................iii

Table of Contents............................................................................................................................iv

List of Tables................................................................................................................................viii

List of Figures and Illustrations.......................................................................................................x

List of Symbols, Abbreviations, Nomenclatures............................................................................xi

Chapter 1: Overview......................................................................................................................1

Chapter 2: Background and Problem..........................................................................................2

2.1 Burden of Injury ............................................................................................................2

2.2 Quality of Injury Care....................................................................................................2

2.3 Defining Quality of Care...............................................................................................3

2.4 Measurement and Quality Improvement.......................................................................4

2.5 The Patient Perspective: a Gap in Trauma Quality of Care

Measurement and Improvement....................................................................................4

2.6 Measuring Patient Experiences in Healthcare...............................................................6

2.7 Overall Objective: Close the Gap in Trauma Quality of

Care Measurement and Improvement.............................................................................7

2.8 Conceptual Framework..................................................................................................8

Chapter 3: Foundational Work (Pre-Graduate) ........................................................................9

Chapter 4: Design of Master's Thesis Projects.........................................................................11

Chapter 5: The Use of Cognitive Interviews to Revise the Quality of Trauma Care

Patient- Reported Experience Measure (Sub-Study 1) ...........................................................12

!v!

5.1 Background..................................................................................................................12

5.2 Methods........................................................................................................................13

5.2.1 Purpose of the Cognitive Interview Guide....................................................14

5.2.2 Recruitment and Data Collection..................................................................15

5.3 Results..........................................................................................................................17

5.3.1 The Six Broad Issues Identified....................................................................19

5.4 Discussion ...................................................................................................................34

5.5 Limitations...................................................................................................................36

5.6 Conclusions..................................................................................................................36

Chapter 6: Quantitative Validation of the Quality of Trauma Care Patient-Reported

Experience Measure (Sub-Study 2) ...........................................................................................37

6.1 Background..................................................................................................................37

6.2 Specific Objectives .....................................................................................................38

6.3 Methods/Design...........................................................................................................38

6.3.1 Recruitment and Data Collection .................................................................39

6.3.2 Sample size...................................................................................................41

6.3.3 Data Analysis................................................................................................41

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!6.3.3.1 Psychometric assessments...............................................................41

6.3.3.2 Summary Scoring.............................................................................48

6.3.3.3 Acute Care and Post-Acute Care Global Rating Comparison.........49

6.4 Results..........................................................................................................................50

! ! 6.4.1 Psychometric Assessments...........................................................................53

6.4.2 Summary Scores...........................................................................................66

!vi!

6.5 Discussion ...................................................................................................................70

6.6 Limitations ..................................................................................................................74

6.7 Conclusions..................................................................................................................77

Chapter 7: Qualitative Analysis of Responses to Open-Ended Items on the Quality of

Trauma Care Patient-Reported Experience Measure (Sub-Study 3) ....................................78

7.1 Background .................................................................................................................78

7.2 Methods........................................................................................................................79

7.2.1 Open-Ended Items and Coding Strategy.......................................................79

7.2.2 Classifying Unsafe Care...............................................................................81

7.3 Results .........................................................................................................................82

7.3.1 Unsafe Care...................................................................................................82

7.3.2 Open Ended Responses.................................................................................85

7.3.3 Acute Care Results........................................................................................86

7.3.4 Post-Acute Care Results...............................................................................90

7.4 Discussion....................................................................................................................93

7.5 Limitations...................................................................................................................96

7.6 Conclusions .................................................................................................................97

Chapter 8: Overall Conclusions.................................................................................................98

Bibliography................................................................................................................................100

Appendix A: Example cognitive interview guide........................................................................105

Appendix B: Modified Aid to Capacity Evaluation form............................................................110

Appendix C: Acute care surveys..................................................................................................112

Appendix D: Post-acute care surveys..........................................................................................123

!vii!

Appendix E: Acute care item response distributions...................................................................132

Appendix F: Post-acute care item response distributions............................................................133

Appendix G: Acute care regression outputs................................................................................134

Appendix H: Post-acute care regression outputs.........................................................................135

Appendix I: Item-level correlation matrix for QTAC-PREM and HCAHPS items...................136

Appendix J: Classification framework for unsafe acts of care....................................................138

!viii!

List of Tables

Table 1. Conceptual Framework for Classifying a Measure of Patient Experiences

with Injury Care...............................................................................................................................8

Table 2. Cognitive interview participant characteristics................................................................18

Table 3. Items that participants did not have the information to answer.......................................23

Table 4. Items that had ambiguous terminology or were inconsistently interpreted.....................24

Table 5. Items that did not measure the intended construct...........................................................27!

Table 6. Items that included assumptions about healthcare processes..........................................28

Table 7. Items measuring non-priority aspects of care..................................................................29!

Table 8. Items with redundant content and those that overlapped with

content on the HCAHPS survey....................................................................................................30

Table 9. Additional content identified as relevant for injury patients...........................................31

Table 10. Prospective cohort study participant characteristics......................................................52

Table 11. Acute care summary of results of psychometric analyses.............................................54

Table 12. Post-acute care summary of results of psychometric analyses......................................55!

Table 13. Results of the acute care factor analysis........................................................................57

Table 14. Result of the post-acute care factor analysis..................................................................58

Table 15. Internal consistency for survey domains and each overall measure..............................59

Table 16. Acute care item-to-domain correlations and domain/item to global correlations.........61

Table 17. Post-acute care item-to-domain score correlations and domain/item

to global correlations......................................................................................................................62

Table 18. Acute care test-retest reliability estimates.....................................................................64

Table 19. Post-acute care test-retest reliability estimates..............................................................65

!ix!

Table 20. Spearman correlation coefficients between QTAC and HCAHPS

domains/stand alone items.............................................................................................................66

Table 21. Acute care item and domain summary scores...............................................................68

Table 22. Post-acute care item and domain summary scores........................................................69

Table 23. Description of the 61 unsafe acts of care perceived by participants..............................84

Table 24. Description of outcomes of the 61 unsafe acts of care perceived by participants........85

Table 25. Themes commented on by more than 25% of acute care participants and major

subthemes.......................................................................................................................................87

Table 26. Themes commented on by more than 25% of post-acute care participants and major

subthemes.......................................................................................................................................91!

!x!

List of Figures and Illustrations

Figure 1. Participant enrollment and study flow............................................................................51

!xi!

List of Symbols, Abbreviations, Nomenclatures

QTAC-PREM: Quality of Trauma Care Patient-Reported Experience Measure

ACE: Aid to capacity evaluation

ISS: Injury severity score

HCAHPS: Hospital Consumer Assessment of Healthcare Providers and Systems

ICC: Intraclass correlation coefficient

!

Chapter 1: Overview

Patient experience is a crucial component of the quality of injury care. To deliver injury care that

meets the needs of patients we must understand their experiences with care. Currently, there are

no valid and reliable tools to obtain patient experiences or patient derived assessments of injury

care (1-4).

The research work described in this thesis dissertation is part of an ongoing effort to develop a

valid and reliable measure of patient experiences with injury care. The ultimate goal is to

produce a measurement tool for use in quality improvement.

This thesis contains three sequentially completed projects;

1. Refinement of a draft measure using cognitive interviewing in preparation for survey validity

and reliability testing;

2. Quantitative assessment of the measure's validity, reliability, and feasibility of

implementation;

3. Qualitative assessment of participant responses to open-ended questions about their injury care

experiences to assess the feasibility and value of including a qualitative component on the final

survey tool.

!2!

Chapter 2: Background and Problem

2.1 Burden of Injury

Injury is one of the leading causes of morbidity and mortality in most countries around the world.

Globally, injuries affect 700 million people each year, including 30 million North Americans and

two million Canadians, and result in nearly five million deaths (5). Injuries are the leading cause

of quality years of life lost and preventable morbidity and mortality in North America (5, 6) due

to the fact they occur most often in young, working-age males (age 15 to 44). In Canada, injuries

are the leading cause of death for all people under 44 years of age (7). In addition to the burden

of death and morbidity, there is also a large financial burden associated with injury. Direct and

indirect medical costs due to injury in Canada totaled $12.7 billion dollars in 1998 (7).

2.2 Quality of Injury Care

Although the healthcare system provides injury patients with vital treatment, assessments of the

quality of injury care demonstrate that care often fails to meet established standards (8) and the

best treatments may not always be used (8). Studies show up to half of all critically injured

patients do not receive recommended care (9), adverse events are common (10), and injury care

may not meet the needs of all patients. For example, patients with traumatic brain injuries, as

well as their families, report deficits in information provided by health care professionals (10-

13). This suggests that the quality and outcomes of injury care may benefit from evidence-based

quality improvement.

While current evaluations of care are cause for concern, there may be additional quality issues

that have not yet been identified. To date, assessments of injury care have primarily focused only

!3!

on a portion of the 'quality picture'. Most measures of injury care quality have targeted the

clinical effectiveness and timeliness of care in the pre-hospital and hospital setting (4). However,

quality in healthcare is composed of more than clinical effectiveness and timeliness.

2.3 Defining Quality of Care

The Institute of Medicine (IOM) broadly defines quality of care as “the degree to which health

services for individuals and populations increase the likelihood of desired health outcomes and

are consistent with current professional knowledge” (8). Further, the IOM identifies six specific

characteristics of high-quality healthcare which can be used to evaluate the quality of care: safe

(avoiding injuries to patients from the care that is intended to help them); effective (providing

services based on scientific knowledge to all who could benefit, and refraining from providing

services to those not likely to benefit); patient-centered (providing care that is respectful of and

responsive to individual patient preferences, needs, and values); timely (reducing waits and

sometimes harmful delays for both those who receive and those who give care); efficient

(avoiding waste, including waste of equipment, supplies, ideas and energy); and equitable

(providing care that does not vary in quality because of personal characteristics such as gender,

ethnicity, geographic location, and socioeconomic status). These characteristics or 'dimensions'

are operational, tangible components that represent the broad construct "quality of care".

Although many quality of care definitions of have been offered, most identify similar dimensions

(8, 14, 15). The IOM has identified their six characteristics as key aims for quality improvement

(8) and suggests that health systems that make gains in these areas will better meet patient needs.

Therefore, high-quality injury care means excellence in all key dimensions of quality.

!4!

2.4 Measurement and Quality Improvement

Quality improvement can be defined as an ongoing process to achieve care that is safe, effective,

patient-centered, timely, efficient, and equitable. A pre-requisite to quality improvement is valid

and reliable information on the key dimensions of quality. Quality of care measures can be used

to identify problem areas, to aid in tailoring interventions to correct care issues, and to track

subsequent gains. For example, The American College of Surgeons Committee on Trauma has

designed comprehensive Performance Improvement and Patient Safety Programs that aim to

standardize practice and improve clinical outcomes (safe, effective, efficient) (16). Without valid

and reliable data to track changes in key metrics (e.g. risk adjusted percentage of patients with

abdominal compartment syndrome), before and after implementation of new strategies to

improve care (e.g. numbering crystalloid bags as part of standard protocols for resuscitation),

these programs would be ineffective. The availability of quality indicators measuring clinical

effectiveness, safety, and efficiency has enable their success. Unfortunately, tools to measure

other key dimensions of injury care quality, particularly patient-centeredness, are lacking. This is

a barrier to achieving the delivery of high-quality injury care.

2.5 The Patient Perspective: a Gap in Trauma Quality of Care Measurement and

Improvement

Instruments to measure patient experiences or obtain patient-derived assessments of care have

been developed in select areas of healthcare. For example, the Consumer Assessment of

Healthcare Providers and Systems Surveys (CAHPS) program (of the U.S. Agency for

Healthcare Research and Quality) has developed valid and reliable measures of patient

experiences with ambulatory (primary care, home care) and in-hospital medical-surgical

!5!

(excluding injury) care (HCAHPS) (17). These consumer-assessment of care measures have been

used extensively in the United States and have been successfully used to identify deficits in care

delivery and support quality improvement (18-20). For example, a study of eight collaborative

medical groups focused on patient-centered care in Minnesota successfully used a modified

CAHPS survey measure to identify opportunities for care improvement, develop quality

improvement interventions, and produce measurable improvements in patient experience (18,

20).

Despite the central importance of patient perspectives of care and the demonstrable value of

patient-centered measures, to date there has been limited progress in incorporating patient

perspectives into quality measurement in injury care. Only a few instruments have been

developed for assessing patients’ experiences or satisfaction with injury services.

Most of the studies measuring patient perspectives of quality in injury care have used non-

validated measures to assess patient perspectives of specific interventions or injury treatments

(21-23). However, some studies have used validated non-injury specific surveys. For example,

the Hospital Version of the CAHPS has been used in a randomized controlled trial of orthopedic

trauma patients as the primary outcome measure assessing a communication based intervention

to improve overall in-patient experience (24). A small number of reliable and valid injury

focused measures exist, but were developed for only specific patient populations (e.g. head

injured patients) and specific injury care services (e.g. rehabilitation services) (22, 23, 25). For

example, surveys of traumatic brain injured patients and their families have highlighted deficits

in care related to information and follow-up (12, 13). While this is an important start to

measuring patient experiences with injury care, assessments of the broader population of injured

!6!

patients are needed. Currently, there are no published measures designed to capture the overall

healthcare experiences of patients with major injuries and as a result, it is not possible to

comprehensively evaluate the quality of care provided to injured patients (3). The need for a

robust patient experience measure for injury care has been identified in the literature (3).

2.6 Measuring Patient Experiences in Healthcare

A common method for capturing the patient perspective is survey based measures (26). Survey

measures are relatively easy to administer, can be inexpensive, and data can be obtained from

large samples fairly quickly. Surveys can be self-complete (mail-out or on-site administration) or

interview based (telephone interview or in-person). Surveys that participants self-complete have

the added advantage of allowing respondents time to provide their assessment of care when it is

convenient for them to do so, and grants respondents time to think about the questions they are

asked.

Survey items measuring patient experiences consist of a description of an event and an

evaluation of how frequently the event occurred (e.g. report: did you receive written discharge

instructions?) or a patient evaluation of an aspect of care (e.g. evaluation/rating: were your

discharge instructions easy to understand?) (26, 27). Patient experience is distinct from patient

satisfaction and may be more useful for the purposes of quality improvement in healthcare (28).

Although satisfaction is a type of patient evaluation (e.g. how satisfied were you with your

discharge instructions?), being satisfied with care does not imply that all aspects of care were

delivered successfully (28). Studies show that patients will identify problems in their care but

still report being 'satisfied'. Patient experience questions are often more detailed than satisfaction

!7!

questions and target specific, actionable aspects of care, which lend themselves well to quality

improvement.

A key challenge to developing a valid and useful patient experience measure is to identify

healthcare events that are important to patients and relevant to patients’ perceptions of the quality

of care. Patients identify multiple factors when describing the 'quality' of care (29). Although

similar broad domains of care are consistently identified by different patient groups, there is

variation between patient populations in the specific events and aspects of care most relevant to

their perceptions of quality (30). Therefore, surveys designed for specific conditions and patients

are necessary as general instruments may not be specific enough to pinpoint areas for quality

improvement.

2.7 Overall Objective: Close the Gap in Trauma Quality of Care Measurement and

Improvement

The research work described in this thesis dissertation is part of an ongoing effort to develop the

first valid and reliable measure of patient experiences with overall injury care. The specific

objective of my Master's thesis was to revise a draft version of the survey and assess the revised

measure's validity, reliability, and feasibility of implementation. The ultimate goal is to produce a

measure that could be feasibly used in local quality assessments, for comparisons of injury care

quality between trauma centres, and as an outcome measure in studies of injury care.

The tool could then be used to guide quality improvement efforts.

!8!

2.8 Conceptual Framework

The measure of patient experiences produced in this thesis can be conceptualized using a

framework which merges the Institute of Medicine's six aims for quality improvement (8) (six

dimensions of quality) and the components of a modern trauma system (Table 1). The measure

could be considered an assessment of the patient-centeredness of care at the pre-hospital,

hospital, post-hospital and secondary prevention components of care.

Table 1. Conceptual Framework for Classifying a Measure of Patient Experiences with Injury Care Institute of Medicine Six Aims for Quality Improvement

(Six Dimensions of Quality) Trauma System

Components

Safe Effective Patient -Centered Timely Efficient Equitable

Pre-Hospitals X Hospital X

Post-Hospital X Secondary Prevention

X

!9!

Chapter 3: Foundational Work (Pre-Graduate)

I completed foundational work as part of my undergraduate thesis to generate a draft version of

the survey. Items for the survey were developed using a two-step approach that included a

structured literature search and focus groups with key trauma stakeholders (patients, family

members, trauma care providers). The draft survey was split into two parts and included a 46-

item acute care component and a 27-item post-acute care component. The survey was pre-tested

and subsequently pilot tested at a level 1 trauma centre (Foothills Medical Centre). The acute

survey was offered to 105 in-patients of which 81 self-completed the paper based survey (77%).

The post-acute survey was offered to 60 outpatients via telephone interview 1-7 months post-

discharge and 53 completed the interview (88%). Item scores were tabulated with descriptive

statistics. Responses to the items were correlated to the overall ratings of care using spearman

correlation coefficients as an indicator of construct validity. Open-ended questions at the end of

the survey were analyzed using thematic analysis. Comments on the survey content, instructions,

and response scales were encouraged and recorded by the research coordinator and first author

(NB). Key lessons from this development and pilot phase were that: (1) measuring patient

experience was feasible; (2) enrolling bereaved family members was not feasible using the same

strategy as for the surviving trauma population; (3) there was significant variation in scores for

several items, which suggests those areas could be targeted for improvement; (4) several items

demonstrated low correlations with the overall ratings of care and needed to be revised or

eliminated; (5) several items showed moderate to high correlations with the overall ratings of

care indicating some construct validity; (6) some participants expressed confusion over the

wording of several items indicating they needed to be revised or eliminated; (7) some

participants suggested the response scale should be changed throughout the survey; (8)

!10!

qualitative results helped corroborate survey content, helped to clarify variations in scores for

items, and identified new content that could be added to the survey in the form of close-ended

items.

The results of this work were published in the Journal of Trauma (1) and informed the design of

my Master's thesis.

!11!

Chapter 4: Design of Master's Thesis Projects

My Master's thesis was informed by the pilot study and designed to consist of three parts:

1. Refinement of the preliminary version of the survey measure using cognitive interviewing

in preparation for a multi-centre validation study;

2. Quantitative assessment of measure validity, reliability, and feasibility of

implementation in multiple trauma centres;

3. Qualitative assessment of participant responses to open-ended questions about their injury

care experiences to assess the feasibility and value of including a qualitative component

on the final survey tool.

These three "sub-studies" are presented sequentially in Chapters 5, 6, and 7.

All three studies received approval from the Conjoint Health Research Ethics Board at the

University of Calgary (ethics I.D.: E-23535, E-24364).

!12!

Chapter 5: The Use of Cognitive Interviews to Revise the Quality of Trauma Care Patient-

Reported Experience Measure (Sub-Study 1)

5.1 Background

Patient experience is a crucial component of the quality of care. However, efforts to incorporate

patient perceptions into quality assessments in injury care have been limited (4). Therefore, we

developed and pilot-tested the first survey to measure patient experiences with overall injury care

(1).

The pilot-test revealed several issues requiring further investigation before large scale validity

and reliability testing could be completed. These issues included: confusion over the wording of

some items, participants expressing difficulty to answer certain items, and suggestions that the

response scale should be changed. In addition, a select number of items were flagged for possible

deletion due to limited content validity.

Survey development is a multi-step process. Surveys often undergo several rounds of pre-testing,

pilot-testing, and revision to identity problems with survey items, response scales, and

instructions. There are several methods available for pre-testing including focus groups and

expert evaluations of content validity and clinical sensibility (31). However, cognitive testing has

become a common method of survey pre-testing in the health sciences and has been used in the

development of many well-validated surveys including a survey to identify patients suffering

from gastro-oesophageal disease (32, 33), a survey measuring public understanding of asthma

and its management (34), and several of the CAHPS survey measures including those targeting

!13!

Medicare recipients' understanding of their health plan (35, 36) and patient experiences with

hospital care (35, 37).

Cognitive testing is a combination of cognitive psychology and survey theory. Fundamentally,

participants’ cognitive processes are explored through interviews during (concurrent) or shortly

after (retrospective) the completion of the draft survey measure. The purpose is to identify

components of a survey that may elicit response error by understanding how participants

perceive and interpret items, instructions, and response options, and how they recall information

and formulate their answers to items (31). It is recommended that cognitive interviewing be a

part of the survey development process in combination with other methods of validity and

reliability testing to produce the best results.

Therefore, I opted to use cognitive interviews to revise my survey measure entitled the "Quality

of Trauma Care Patient-Reported Experience Measure" (QTAC-PREM) in preparation for multi-

centre validity and reliability testing. The objective of this study was to conduct cognitive

testing of my survey through interviews with injured patients and family members of

injured patients, and use the results to refine the survey into a parsimonious set of items

that function as intended.

5.2 Methods

Cognitive interviews are semi-structured and use pre-written guides to help elicit information

from participants. In concurrent interviewing, the interviewer is present while the participant

completes the survey. Participants are asked to read each item aloud, verbalize their

!14!

interpretation of the item and response option wording, and explain the cognitive processes they

go through to answer the item. The interviewer may ask about interpretations of specific words

or instructions, the type of information recalled to answer an item, and can ask further follow-up

questions about any issues identified during survey completion. In retrospective interviewing, the

participant completes the measure on his or her own and the interviewer asks questions post-hoc.

5.2.1 Purpose of the Cognitive Interview Guide

I wanted to ensure that survey items were clear, unambiguous, and interpreted similarly by

different respondents; that respondents had the ability to provide an answer to each item; that

response options were grammatically and logically appropriate for the items; and that

instructions were clear and enabled respondents to successfully complete the surveys (acute and

post-acute). I also wanted to explore content validity and assess redundancy of the survey items

with an existing survey of patient experience with general hospital care (HCAHPS). Therefore, I

developed cognitive interview guides to meet the following specific objectives:

1. to identify participants’ perceptions and interpretation of item wording;

2. to identify if participants were able to recall the information necessary to provide answers to

the items;

3. to identify items that participants had difficulty answering and the reasons the items did not

function as intended;

4. to identify the response options participants prefer to use to answer the global item;

5. to assess the clarity and comprehensiveness of survey instructions;

6. to identify items on the survey that participants felt addressed non-priority aspects of care

(those not affecting their overall perception of the quality of care);

!15!

7. to identify key elements in injury care that were not included on the survey;

8. to identify redundant items;

9. to identify items that overlap in content with items on the Hospital Version of the Consumer

Assessment of Healthcare Providers and Systems Survey (HCAHPS) to help direct the

development of an injury specific tool.

One key revision occurred prior to the first round of cognitive interviewing; I replaced the two

original response scales (five-point poor-excellent and five-point completely satisfied-very

dissatisfied). In pilot testing many participants commented that they would prefer different

response options. Some suggested the scales over-represented positive responses (three positive,

two negative), that many items didn't grammatically and logically match the poor-excellent

responses, and that the five-point global rating scale (satisfied-very dissatisfied) did not provide

enough granularity for the global rating item. I chose to use three scales in their place: yes/no

scale, a four-point frequency scale (never, sometimes, usually, always), and a 0-10 global rating

scale. These scales were selected given their successful implementation on the HCAHPS survey

(38). All original items were re-worded to accommodate the new response options and therefore

may not match the original survey items published (1). Items phrased to match the new response

scales underwent cognitive testing. Preference for the global response scale was also tested.

5.2.2 Recruitment and Data Collection

The sample was obtained from two sources. First, I approached consecutive in-patients (or their

family members) 18 years of age or older admitted to hospital with a primary injury diagnosis

and who had been in-hospital for at least three days. I offered participation to either the acute

!16!

care or post-acute care component. Second, I approached discharged patients convened for a

focus group study on patient-centered injury care. These patients were 18 years of age or older

who had been admitted to Foothills Medical Centre for a critical injury within the 12 months

prior to the launch of my study. Members of their family and family members of non-survivors

were also eligible for enrollment. I offered them participation to the post-acute care component.

Acute care items were tested using in-person interviews in-hospital with injured patients and

family members of injured patients at a level 1 Canadian trauma centre. All participants were

given the paper-based self-complete survey. Post-acute care items were tested via telephone

interviews with injured patients and family members of injured patients. Most interviews

occurred five to six weeks after patient discharge however, a sub-set of patients (recruited from

the focus groups) completed the interview two to twelve months post-discharge. I aimed to have

half of the participants undergo concurrent questioning during survey completion and half to

undergo retrospective questioning after survey completion.

There was no pre-defined sample size. I sampled patients and family members and serially

revised the survey until there was consistency in item interpretation among multiple participants,

and no participants could identify major problems with items, instructions, response options, or

survey content. The interview guide was revised after each round of testing to reflect changes in

the survey and to further explore issues that arose in previous testing rounds. The first round

interview guide is provided as an example in Appendix A.

!17!

5.3 Results

The acute care survey was tested in three rounds with ten injured patients and ten family

members of injured patients while the post-acute care survey was tested in two rounds with seven

injured patients and three family members. Participant characteristics are described in Table 2.

Participants were primarily male (82%) with major injuries (73%) (median injury severity

score=17, IQR=13-23). Surrogate participants (family members) were primarily female (69%)

and patients’ wives (38%). Table 3 to Table 8 describes the item level results of the cognitive

interviews. Of the 43 items tested, 24 items were revised and 19 items were eliminated. I

identified six issues with items during the interview process that guided revisions to the

measures.

!18!

Table 2. Cognitive interview participant characteristics Participant Characteristics n=30

Patients n=17 Male 82% Age, median years (IQR) 43 (28, 55) Ethnicity Caucasian 67% Asian/East Indian 23% Aboriginal/First Nations 10% Education High school or less 34% Some college or more 66% Residence Alberta 90% Urban 80% Mechanism of injury Motor vehicle 43% Fall 37% Assault 20% Self-rated health at time of survey completion Poor, fair, or good 60% Very good or excellent 40% ISS<12 27% ISS>12 ISS, median (IQR)

73% 17 (13, 23)

Surgery during hospital stay 40% Intensive care unit admission during hospital stay 20% Surrogate Characteristics n=13 Male 31% Relationship to patient Wife 38% Brother 23% Mother 23%

!

5.3.1 Six Broad Issues Identified

Participants did not have the information to answer items

There were nine items that participants did not have the information to answer (Table 3).

Participants had difficulty answering items that differentiated the phases of care due to recall

issues (pre-hospital, emergency department, intensive care unit) or because the distinctions were

too fine to make (in-hospital rehabilitation, hospital ward). Participants could not identify

specific medical skills to evaluate provider competence. Participants trusted that care givers were

skilled and competent and instead evaluated the staff's communication skills and interpersonal

characteristics. Also, participants could not assess if they had been treated unfairly compared to

others because they were unaware of the treatment other patients received.

Items contained ambiguous terminology or were inconsistently interpreted

Thirteen items contained ambiguous language or were inconsistently interpreted (Table 4).

Descriptions of care being "well-timed", "organized", and "kind and friendly" were ambiguous

and interpreted in multiple ways. Often, the common interpretations of the items overlapped with

content captured elsewhere on the survey or the HCAHPS survey and the original items were

deleted. For example, when asked how "organized" acute care was, participants most commonly

evaluated the clarity of information during transfers (where and why); speed of responses to care

requests; and the consistency of information from providers. Each of those three issues was

already addressed by an individual item. In some cases, ambiguous items were replaced by

several focused items. For example, a transfer item about being "moved-well" was replaced by

three items that targeted the elements of a "good" transfer: information about where the patient

was being transferred to; being kept comfortable during transfers; being oriented to new hospital

!20!

units upon arrival. Some items required slight revision to increase clarity and consistency of

interpretation. For example, participants were confused by the phrase "deal well with concerns"

in an item meant to inquire about respecting and responding to patient requests. The phrase was

replaced with "take action to deal with concerns", which prompted assessments of whether

providers acknowledged and responded in some way to patient requests. Three items about

hygiene, dignity, and religious needs being "treated well" were grammatically and logically

confusing. The phrasing was revised for clarity and to appropriately match the subject:

maintained personal hygiene; considered dignity; respected religious preferences.

Items did not measure the intended construct

Six items did not measure intended constructs (Table 5). In some instances, participants only

evaluated a portion of the intended construct. For example, an item asking if providers

"explained what they do" prompted recall only of discussions in which providers explained the

treatments they were going to deliver and not of other aspects of their involvement with patients

(e.g. how frequently they would check on the patient, if they had authority to make final

treatment decisions). Phrasing the item as "[did the providers]...clearly explain their role in your

care" obtained assessments of the full construct. Two items about symptom relief were not

measuring the intended symptom. The phrase "shortness of breath" prompted patients to think

about hyperventilating rather than difficulty breathing associated with chest/abdominal injuries.

The phrase "difficulty breathing" was incorporated. An item on "agitation" was confused with

pain, however, adding the term "irritability" helped to isolate the construct. Additionally,

participants identified situations where providers gave a great effort to treat their difficulty

breathing, agitation/irritability, or pain but were not successful at alleviating the symptom. They

!21!

suggested that these symptoms may not always be amenable to treatment and that the effort to

treat should be the focus of evaluation. Those items were changed from "how often was your

[pain] treated well" to "how often did providers do everything they could to help with [pain]".

Some participants did not assess the intended construct if they felt the item was not applicable to

them. For example, an item on how often "emotional needs were considered" did not measure the

intended construct for participants that felt they had no emotional needs. Most would recall

whether emotional support was offered although those not needing/wanting emotional support

would answer "no" even if the support was offered. Some thought consideration of emotional

needs was only necessary for critically or injured patients or those subjected to violence.

However, many felt it was important to know if emotional support was available regardless of

need. The item was revised to assess whether or not a staff member offered to speak to patients

about their emotional needs.

Items included assumptions about healthcare processes

Four items included invalid assumptions about what occurs during the recovery process

(Table 6). Two items asked whether patients "got the information they needed" about how

injuries would affect their lives, recovery timelines, and what would be involved in recovery.

Patients primarily answered "no" because they felt the detail of information was inadequate.

However, providers are often not able to give exact information about how injuries will affect a

person's life, how long it will take to recover, and what will be involved in recovery. While it

may be unreasonable to expect precise information about recovery, it is important for patients to

get some information. Therefore, the item was reframed to assess whether the providers

discussed how injuries "might affect" a patient and how long it "might" take to recover. Another

!22!

item was revised to assess whether patients were told "how they should care for their injuries

after leaving the hospital" rather than "what would be involved in recovery".

Items measuring non-priority aspects of injury care

Eight items on the post-acute survey were identified as non-priority for injury care patients

(Table 7). Items regarding the nature of interactions with providers during follow-up

appointments (kind and friendly; providers introducing themselves; treated fairly; considering

emotional needs, dignity, respect, personal preferences, religious needs) had little value for

patients. During post-acute care, patients usually have short interactions with follow-up

providers and participants suggested that their key priorities during these interactions were to

obtain information and advance the recovery process. The deleted items did not align with these

priorities.

Items were redundant or overlapped with items on the HCAHPS survey

Six items were found to be redundant with other content on the QTAC-PREM or on the

HCAHPS survey (Table 8). Items on anxiety, personal preferences, respecting the patient, and

hospital cleanliness were redundant with other items on the QTAC-PREM or the HCAHPS and

were deleted. The single pain item overlapped with two-validated pain items on the HCAHPS.

However, pain is a key issue for injury patients and the QTAC-PREM should have the capability

of being administered without supplemental surveys. The QTAC-PREM item was replaced with

the HCAHPS items due to participants' preferences.

!

Table 3. Item

s that participants did not have the information to answ

er Survey, Item

# Specific Issue/Interpretation

Action T

aken A

cute 1, 2, 3: All three item

s consisted of one core question w

ith five sub-components

addressing: before hospital care, em

ergency department,

intensive care unit, hospital unit, in-hospital rehabilitation.

Difficulty distinguishing the sub-com

ponents due to recall issues (pre-hospital, em

ergency, ICU

) or distinctions too fine to m

ake (in-hospital rehab, hospital w

ard)

Revised. A

ll three items w

ere collapsed and subsequently underw

ent further cognitive testing.

Post 1, 2, 3: All three item

s consisted of one core question w

ith two sub-com

ponents addressing: out-patient rehabilitation and follow

-up.

Difficulty distinguishing the tw

o sub-components.

Revised. A

ll three items w

ere collapsed and subsequently underw

ent further cognitive testing.

Acute 2, Post 2: D

uring your care for this injury, how

often w

ere your healthcare providers (doctors, nurses, therapists, etc) skilled and com

petent in helping you recover from

your injury? (Form

erly Acute 2, Post 2: R

ate the healthcare providers that took care of you)

Participants not able to articulate specific components

of medical skill and com

petence that they evaluated. They trusted that the providers w

ere skilled and com

petent and instead thought of aspects of com

munication and interpersonal characteristics of

providers.

Deleted.

Acute 11: H

ow often w

ere you treated fairly by all healthcare providers and treated the sam

e as other injured people around you?

Could not confidently assess how

other patients were

treated in order to compare. Prom

pts added to direct patients to think about reasons for possible discrim

ination.

Revised.

Acute 30: H

ow often w

ere you treated unfairly because of your age, ethnicity, gender, or personal characteristics?

!24!

Table 4. Item

s that had ambiguous term

inology or were inconsistently interpreted

Survey, Item #

Specific Issue/Interpretation A

ction Taken

Acute 1: H

ow w

ell-timed w

as the care you received (did you receive care w

hen it was needed?)

"Well-tim

ed" ambiguous. M

ultiple interpretations: responsiveness to care request; w

aiting times in the

emergency departm

ent, for diagnostic imaging, for surgery,

and for transfers.

Deleted. Item

on responsiveness effectively covered on the H

CA

HPS. U

nable to develop an item

on wait tim

es for different aspects of care.

Acute 3: H

ow often w

ere you told w

hat you needed to know in a w

ay you could understand?

Participants confused by the wording "w

hat you needed to know

". They evaluated clarity of all the information they

received regardless of perceived need.

Revised.

Acute 9: H

ow often did your healthcare

providers (e.g. doctors, nurses, therapists, etc.) explain things in a w

ay you could understand? A

cute 5: How

often was your care

well organized? (all of your tests,

treatments, and visits from

different healthcare providers)

Unclear w

hat participants considered to be "organized" care. M

ultiple interpretations: the clarity of information

during transfers (where and w

hy); prompt responses to care

requests; consistency of information from

providers.

Deleted. C

ontent covered by survey and H

CA

HPS item

s.

Acute 6: People w

ith injuries are often m

oved from one unit or

hospital to another during their injury care. If this happened to you, how

often did the moves go

well?

Multiple interpretations: being told w

here they were being

transferred to; being kept comfortable during transfers;

oriented to new hospital units upon arrival.

Revised. Item

split into the three components

participants identified. List for acute item 17

were key landm

arks described by participants. A

cute 15: During your transfers did the

hospital staff or healthcare providers clearly explain w

here you were being transferred to?

Acute 16: D

uring your transfers, how often

were you kept com

fortable? A

cute 17: When you arrived to a new

hospital unit did a healthcare provider explain w

here im

portant landmarks w

ere in the unit? (e.g. call button, bathroom

, nurse's station, water/ice

machine)

Acute 8b: H

ow often did

mem

bers of your care team (e.g.,

nurses, doctors, other healthcare providers) provide kind and friendly care?

Multiple interpretations: w

hether providers introduced them

selves; explained their role in care; provided a lot of inform

ation; were respectful.

Deleted. C

ontent covered by survey or H

CA

HPS item

s.

!25!

Table 4 continued. Item

s that had ambiguous term

inology or were inconsistently interpreted

Survey, Item #

Specific Issue/Interpretation A

ction Taken

Acute 8c: H

ow often did the

care team deal w

ell with your

concerns or frustrations?

"Deal w

ell" ambiguous. "Taking action to deal w

ith concerns" consistently interpreted as acknow

ledgment of and responsiveness to requests.

Revised.

Acute 25: W

hen you expressed concerns or frustrations about your care how

often did your healthcare provider take action to deal w

ith them?

Acute 10e: H

ow often w

as your personal hygiene treated w

ell? H

ygiene being "treated well" nonsensical and

ambiguous. Som

e participants gave answers even though

only family helped w

ith hygiene. Explored overlap with

HC

AH

PS item on help getting to the bathroom

and using a bedpan. Patients suggested that getting to the bathroom

wasn’t the only aspect of hygiene. "H

ygiene" included: frequency of show

ers/sponge baths; cleaning defecation and excoriation.

Revised. Providers that help to m

aintain hygiene listed to direct participants to think of the care provided by staff, not fam

ily. A

cute 23: How

often did your nurses or other hospital staff help you m

aintain your personal hygiene?

Acute 10h: H

ow often w

as your dignity treated w

ell? D

ignity being "treated well" nonsensical and am

biguous. Participants did distinguish dignity from

being treated kindly. They consistency identified being physically covered up and not being exposed.

Revised.

Acute 27: H

ow often w

as your dignity considered by the healthcare providers?

Acute 10j: H

ow often w

ere your cultural, religious, and spiritual needs treated w

ell?

Needs being "treated w

ell" nonsensical and ambiguous.

Participants indicated the key issue was respecting

preferences rather than considering or accomm

odating needs. R

especting preferences prompted participants to

think about providing access to spiritual staff and not discrim

inating based on preferences.

Revised.

Acute 29: H

ow often w

ere your cultural, religious, or spiritual preferences respected by the healthcare staff and religious or spiritual staff?

!26!

Table 4 continued. Items that had am

biguous terminology or w

ere inconsistently interpreted Survey, Item

# Specific Issue/Interpretation

Action T

aken Post 1: H

ow w

ell-timed w

as the care you received (did you receive care w

hen it was

needed?)

"Well-tim

ed" ambiguous. K

ey aspect of care timing

post-discharge was prom

ptness of follow-up

appointments. H

owever, discharge planners or other

hospital staff arranges for first follow-up appointm

ents w

ith the trauma surgeons, specialists etc. A

lthough patients arrange subsequent appointm

ents or appointm

ents with fam

ily doctors and rehabilitation specialists.

Revised.

Post 8a-8c: Did you have difficulty getting

follow-up appointm

ents when you w

anted them

with....

A. a traum

a doctor, surgeon, or specialist? B

. A fam

ily doctor or general practitioner? C

. A physio, rehabilitation, or occupational

therapist? Post 3: H

ow often w

ere you told w

hat you needed to know

in a way you could

understand?

"What you needed to know

" confusing. Evaluations w

ere of the clarity of information about specific injuries

in follow-up appointm

ents.

Revised.

Post 12: During your follow

-up appointm

ents, how often did your healthcare

providers explain things about your injuries in a w

ay you could understand?

Post 5: How

often was your

care well organized? (all of

your tests, treatments, and

visits from different

healthcare providers)

Unclear w

hat participants considered to be "organized" care. Interpretations included: ease of getting appointm

ents; family doctors receiving inform

ation from

the hospital.

Deleted. C

ontent covered by items on

survey.

Post 9c: When you first m

et the care team

how often did

they deal well w

ith any concerns or frustrations?

"Deal w

ell" ambiguous. Participants suggested "taking

action" to deal with concerns w

as better. This was

consistently interpreted as provider acknow

ledgment of and responsiveness to requests.

Also, this w

as an issue that recurred after meeting

providers for the first time.

Revised.

Post 13: During your follow

-up appointm

ents, when you expressed concerns

or frustrations how often did your healthcare

providers take action to deal with them

?

!27!

Table 5. Item

s that did not measure the intended construct

Survey, Item #

Specific Issue/Interpretation A

ction Taken

Acute 8a: H

ow

often did the care team

introduce them

selves and explain w

hat they do?

"What they do" thought to be too lim

ited, describing only their specific m

edical responsibilities. The phrase "their role in your care" was

preferred because it prompted patients to assess if a provider explained

all aspects of their involvement w

ith the patient (i.e. treatments they w

ill deliver, how

often they will be seeing the patient).

Revised.

Acute 24: W

hen meeting a new

healthcare provider for the first tim

e how often did they

introduce themselves and clearly explain their

role in your care?

Acute 9: H

ow often

were you included

as part of your care team

?

The intended construct was the degree of inclusion in decision m

aking how

ever, participants thought of whether their questions w

ere answered

and whether treatm

ent and care options were explained. These are

aspects of comm

unication and do not reflect if their preferences were

incorporated into the treatment plan.

Deleted. C

ontent covered by other items.

Acute 10a: H

ow

often was your

shortness of breath treated w

ell?

Shortness of breath interpreted as the type of breathing experienced during panic attacks, not as difficulty breathing due to injured chest/abdom

en. Also, participants identified situations w

hen providers w

ere not clinically successful at treating the symptom

. Participants suggested w

e evaluate the effort to treat, not outcome.

Revised.

Acute 20: H

ow often did the healthcare

providers do everything they could to help you w

ith your difficulty breathing?

Acute 10b: H

ow

often were your

feelings of agitation treated w

ell?

Agitation som

etimes confused w

ith pain. After adding "irritability" to the

item, participants could differentiate from

pain. Also, participants

identified situations when providers w

ere not clinically successful at treating the sym

ptom. Participants suggested w

e evaluate the effort to treat, not outcom

e.

Revised.

Acute 21: H

ow often did the healthcare

providers do everything they could to help you w

ith your agitation or irritability?

Acute 10f: H

ow

often were your

emotional needs

considered?

Most w

ould recall whether em

otional support was offered although those

not requiring emotional support w

ould answer no even if support w

as offered. M

any thought consideration of emotional needs w

as only necessary for critically or violently injured patients. Som

e felt it was

important to know

if emotional support w

as available regardless of need. They identified support staff and nurses as the ones to provide this support, not physicians.

Revised. R

eworded to identify w

hether the support w

as offered, regardless of need. A

cute 26: Did a healthcare staff m

ember (e.g.

psychologist, social worker, nurse) offer to

speak with you about your em

otional needs.

Post 7: Was your

regular doctor well

informed about your

injuries and treatm

ents?

Intended to measure coordination betw

een hospital and family doctor but

there was confusion about w

ho should be informing the physician: som

e rated their ow

n explanations to their physicians, rather than the transfer of inform

ation from the hospital or attending acute care physician.

Revised.

Post 16: In your opinion, how m

uch inform

ation about your hospital stay was

comm

unicated to your family physician or

general practitioner on a scale of zero to ten, zero being no inform

ation and ten being all the inform

ation?

!28!

Table 6. Item

s that included assumptions about healthcare processes

Survey, Item #

Specific Issue/Interpretation A

ction Taken

Acute 7a: D

id you get the inform

ation you needed in a w

ay you could understand about how

the injuries m

ight affect your life?

Providers often do not know how

a patient's injuries could affect them

after they leave the hospital. H

owever, participants said providers w

ould discuss it even if they couldn't give exact details. Item

too long.

Revised.

Acute 11: D

id your healthcare discuss how the injuries

might affect you after you leave the hospital?

Acute 7b: D

id you get the inform

ation you needed in a w

ay you could understand about how

long it would

take you to feel better and w

hat would be involved in

recovery?

Providers often cannot give an exact timefram

e for recovery or know

exactly what w

ill be involved in recovery. H

owever, participants valued an

approximate tim

eframe and som

e discussion about how

to care for injuries post-discharge. Item too

long and double barreled: addressing recovery tim

eline and activities.

Revised. Item

split into two com

ponents. A

cute 12: Did your healthcare providers provide

instructions on how you should care for your injuries

after you leave the hospital? A

cute 13: Did your healthcare providers discuss how

long it m

ight take you to recovered from your injuries?

Post 7b: Did you get the

information you needed in

a way you could understand

about how long it w

ould take you to feel better and w

hat would be involved in

recovery?

At the tim

e of follow-up providers still m

ay not be able to give an exact tim

eframe for recovery.

Approxim

ate timeline still im

portant. "What w

ould be involved in recovery" often interpreted solely as physical restrictions on activities. H

owever, w

e w

anted a broader item assessing inform

ation about recovery. Item

too long and double barreled: addressing recovery tim

eline and activities.

Revised. Item

split into two com

ponents. Post 9: D

uring your follow-up appointm

ents, did your healthcare providers explain the next steps in your recovery from

injury for example, activities you should

or should not do, necessary medications, tests and

treatments, or other follow

-up appointments?

Post 10: During your follow

-up appointments, did your

healthcare providers explain approximately how

long it w

ould take you to recover? Post 8b: D

id you get the inform

ation you needed in a w

ay you could understand about discharge and hom

ecare?

Assum

ptions about the services patients receive. All

should get discharge information but not all

necessarily get homecare inform

ation. Many had

difficulty recalling if verbal information w

as given prior to discharge.

Revised.

Post 2: Before leaving the hospital, did your hospital

healthcare providers give you written instructions on

how to care for your injuries after being discharged?

!29!

Table 7. Item

s measuring non-priority aspects of care

Survey, Item #

Specific Issue/Interpretation A

ction Taken

Post 9a: When you first m

et the care team

how often did they introduce them

selves and explain w

hat they do?

Not relevant because patients have already m

et m

ost of the follow-up providers (i.e. fam

ily doctor, surgeons from

acute care centre)

Deleted.

Post 9b: When you first m

et the care team

how often did they provide kind and friendly

care?

Not relevant because patients have already m

et m

ost of the follow-up providers. N

ot a crucial elem

ent of the recovery process. Support through inform

ation provision and encouragem

ent more relevant.

Deleted.

Post 10a-e: How

often were the follow

ing treated w

ell... A

. emotional needs?

B. respect?

C. dignity?

D. values and personal preferences for care?

E. cultural, religious, and spiritual needs?

Not im

portant during follow-up care w

hen interactions w

ith providers are brief and focused on steps needed to recover. A

lso, not gram

matically correct and nonsensical to

"treat" respect, dignity, values and personal preference, cultural needs.

Deleted.

Post 11: Were you treated fairly by all

healthcare providers and treated the same as

the other injured people around you?

Not im

portant during follow-up care w

hen interactions w

ith providers are brief and focused on steps needed to recover. A

lso, participants do not observe interactions betw

een providers and other patients and therefore had difficulty m

aking comparisons.

Deleted.

!30!

Table 8. Item

s with redundant content and those that overlapped w

ith content on the HC

AH

PS survey Survey, Item

# Specific Issue/Interpretation

Action T

aken A

cute 7a: Did you get the

information you needed in

a way you could understand

about your injuries?

Overlap w

ith item on clarity of inform

ation. U

nique interpretation of this item w

as whether

providers explained all of the patients' injuries. Participants evaluated w

hether providers explained w

hat was injured and anatom

ically how

it occurred.

Revised. R

efocused on the unique part of participants' interpretations. A

cute 10: Did your healthcare providers clearly

explain all your injuries to you in a way you could

understand?

Acute 10c: H

ow often w

ere your feelings of anxiety treated w

ell?

Participants interpreted anxiety the same as

agitation/irritability. Overlap w

ith item on

agitation/irritability.

Deleted.

Acute 10d: H

ow often w

as your pain treated w

ell? O

verlap with pain item

s on the HC

AH

PS survey. Item

s were com

pared and participants preferred the H

CA

HPS item

s. Pain m

anagement one of the m

ost important

components of the m

easure.

Revised. Tw

o well-validated pain item

s from the

HC

AH

PS survey were added to replace our single

pain item.

Acute 18: H

ow often w

as your pain well controlled?

Acute 19: H

ow often did the healthcare providers do

everything they could to help you with your pain?

Acute 10g: H

ow often

were you treated w

ith respect?

Overlap w

ith HC

AH

PS item about courtesy

and respect. D

eleted.

Acute 10i: H

ow often w

ere your values and personal preferences for care considered by the healthcare providers?

Overlap w

ith two item

s: “concerns and frustrations” and "cultural, religious, spiritual needs".

Deleted.

Acute 12: H

ow often w

as the hospital kept clean, com

fortable, and m

aintained?

Evaluations were m

ade of room cleanliness not

overall hospital cleanliness, suggesting overlap w

ith HC

AH

PS item on clean room

and bathroom

.

Deleted.

!31!

Table 9. A

dditional content identified as relevant for injury patients Survey, Item

# R

eason for Item G

eneration/Item R

evision (N

ew) A

cute 11: During your follow

-up appointm

ents, did you get all of the information that

you wanted from

the healthcare providers?

Most participants expressed receiving a lack of inform

ation during appointm

ents. This item w

as developed to assess the overall amount and

quality of information received during appointm

ents. (N

ew) A

cute 14: How

often was the inform

ation you received from

your various healthcare providers consistent?

Participants highlighted the importance of consistent inform

ation from

providers. They described distress associated with getting inconsistent

information because of the resulting confusion about w

hat was "correct"

and they took it as an indication of poor coordination. (N

ew) A

cute 22: When the healthcare providers

rolled you, turned you over in bed, or helped you get out of bed and m

ove around, how often did they do it

carefully?

In the pilot test prior to cognitive interviews and in the first round of

interviews participants com

plained about being moved forcefully, being

jerked, or jolted causing concern, distress and discomfort. Instances of

were this perceived as unsafe care.

(New

) Acute 28: H

ow often did you experience care

that was unsafe? (e.g. given the w

rong medication,

wrong test, w

rong treatment, etc.)

Added a safety question to obtain a quantitative evaluation of the num

ber of patients w

ho perceived unsafe events in-hospital.

(New

) Post 1: Where did you go after being

discharged from [H

ospital Nam

e]? N

ot all patients went hom

e after discharge. We added this item

to map

patient injury care and identify if there are different issues faced by patients on different care pathw

ays. (N

ew) Post 4: A

fter being discharged from the

hospital, did you have enough pain medication to

control your pain well?

Participants identified a gap in pain managem

ent after leaving hospital. A

lthough prescriptions are filled in-hospital prior to discharge, limited

mobility or difficulty getting appointm

ents with fam

ily doctor makes re-

filling prescriptions difficult. (N

ew) Post 3: D

id the written instructions you

received provide you with enough inform

ation to help you care for your injuries after being discharged?

The amount and quality of w

ritten discharge instructions important for

patients to know how

to care for their injuries at home.

(New

) Post 5: After being discharged from

the hospital, did you get all of the support services that you w

anted, for example hom

e care, social work, or

counseling?

Am

ount of support services, specifically home care, social w

ork, and psychological and psychiatric counseling, had been an issue for patients in pilot study and re-identified by cognitive interview

participants, especially by brain injured patients and those unable to im

mediately return to w

ork. !!

!32!

!!Table 9 continued. A

dditional content identified as relevant for injury patients Survey, Item

# R

eason for Item G

eneration/Item R

evision (N

ew) Post 6a-6c: Since being discharged from

the hospital, have you attended an appointm

ent to follow-up about your

injuries with....

A. a traum

a doctor, surgeon, or specialist? B

. A fam

ily doctor or general practitioner? C

. A physio, rehabilitation, or occupational therapist?

Used as screener item

to direct participants to applicable items.

Also, added to identify w

hich providers participants are evaluating in their aggregate answ

ers. General practitioner added because

some participants didn't have regular fam

ily physicians and attended w

alk in clinics for follow-up.

(New

) Post 7a-7c: A

re you scheduled for an appointment to follow

-up about your injuries w

ith... A

. a trauma doctor, surgeon, or specialist?

B. A

family doctor or general practitioner?

C. A

physio, rehabilitation, or occupational

Added to m

ap patient care.

(New

) Post 14: After being discharged from

the hospital, how

often was the inform

ation you received from your

different healthcare providers consistent?

Participants identified an issue with consistency of inform

ation from

different follow-up providers m

ost comm

only about what to

do during recovery including activities that could be tolerated and w

hether or not to attend physiotherapy. (N

ew) Post 15: Since being discharged from

the hospital, how

often have you experienced healthcare that was unsafe?

Added a safety question to obtain a quantitative evaluation of the

number of patients w

ho perceived unsafe events post-discharge. (N

ew) Post 17: H

ow w

ell were you guided through the

recovery process by your healthcare providers after being discharged from

the hospital on a scale of zero to ten, zero being poor guidance and ten being excellent guidance?

Many participants (especially those w

ith brain injuries) expressed a lack of guidance post-discharge. This item

developed to address that issue and get an overall rating of guidance. Participants evaluated: the am

ount and quality of information about recovery

and next steps; the ease of comm

unication access to providers; w

hether providers answered their questions during appointm

ents.

!

New Content/Items

In addition to item revisions and deletions, 17 new items were developed based on priority

aspects of care identified by injury patients and family members (Table 9). Five acute care items

and eight post-acute care items were generated and focused on the amount and consistency of

information provided, being moved and handled carefully, perceived unsafe care, pain

management post-discharge, amount of support services post-discharge, and overall guidance

post-discharge. Seven items were also added to the post-acute survey to help map care and

identify which providers a patient has followed up with (discharge location, appointments

attended/scheduled).

Additional Revisions

Five additional revisions were made to the measure. (1) The 11-point global rating scale replaced

the original five-point satisfaction scale. Participants preferred the 11-point scale. Participants

criticized the original scale because it was perceived to be unbalanced (three positive options,

two negative), it was unclear what it meant to be "satisfied", and the five-point scale did not

provide enough granularity for the global rating item. (2) The response category "not able to

answer" was added to the surrogate response options for several items in anticipation that some

surrogate participants may not have the information necessary to answer. (3) Additional

demographic questions (n=3) were added to aid in case-mix adjustment and to describe the

patient population. These included health status, ethnicity, and identification of a patient’s

primary language. (4) A timeframe was added to every item to identify the period of time the

participant was to provide an assessment for: "during your care for this injury..." for acute care

items and "after being discharged..." or "since being discharged..." for post-acute care items. In

!34!

the last round of interviews I asked whether patients preferred a preamble explaining the

timeframes or to include them in every question. There were mixed results regarding preference.

Some suggested that inclusion of the timeframe in every item made items too long and tedious

while others insisted it helped focus their assessment. To reduce the tediousness of the acute care

self-complete survey, but not to lose the benefit of focusing participants’ assessments, I included

the timeframe "during your care for this injury..." in the header in bold letters. However, the

nature of the post-acute survey (telephone interview) necessitated the inclusion of the timeframe

in every item. I revised the instructions to make it clear that the respondents needed to aggregate

their answers to certain items and consider care provided by multiple providers. (5) The layout of

the measure was altered. The survey was split into two columns with vertical placement of

options to shorten its appearance and condense responses. The post-acute survey was

reorganized, with screener items presented first, to direct participants to relevant items.

5.4 Discussion

Cognitive interviewing is a non-traditional pre-testing method that aims to identify how

participants interpret and answer survey items. Its primary purpose is to decrease measurement

error that could compromise a survey’s validity (39, 40) although other issues can be explored

during cognitive interviews including content validity and preferences for survey layout. This

method has played an important role in the development of well-validated surveys (32-35, 37).

In this study, I used cognitive interviews to revise a survey measure entitled the "Quality of

Trauma Care Patient-Reported Experience Measure" (QTAC-PREM) in preparation for multi-

centre validity and reliability testing. Six key issues with select survey items were identified:

!35!

(1) participants did not have the information to answer items; (2) items contained ambiguous

terminology or were inconsistently interpreted; (3) items did not measure the intended

constructs; (4) items included assumptions about healthcare processes; (5) items measured non-

priority aspects of injury care; and (6) items were redundant or overlapped with items on the

HCAHPS survey. These results were used to revise survey items and response scales. During the

process of interviewing, new content important to injury patients' perceptions of care was

identified and added to the survey. Revisions were also made to the structure of the survey.

The results of this study are similar to those published in studies of other patient groups. For

example, the CAHPS II consortium (which included the American Institutes for Research,

Harvard Medical School, and RAND) conducted cognitive testing with a wide variety of

participants during development of a patient experience survey for general hospital care

(HCAHPS). The five broad issues with survey items that the authors identified closely match

those found in my study (37): redundant items, ambiguous language, inability to answer items

due to lack of knowledge, assumptions about what patients experience in care, and items not

measuring intended constructs. Housen et al. conducted cognitive interviews with residents of a

nursing home (41) to test a survey measure and found similar issues of item clarity, items based

on assumptions about services, items which required information residents did not have or could

not remember, and the need for a response scale with more options (increased granularity). These

broad types of issues are likely similar across different patient/participant groups.

!36!

5.5 Limitations

There are limitations to this study. The sample of participants was small and may not be

representative of the entire population to be surveyed. There may be item-related issues within

subgroups of the injury population that were not identified. However, sample sizes in studies

using cognitive interviewing are typically small and cognitive interviewing is not a method for

obtaining statistical estimates. Its aim is to identify potential sources of response error among the

type of participants that will be surveyed (40). I was able to identify issues common among the

participants in my study and which resonate with findings in other patient groups. Although the

sample size was small, participants were sampled until no further major issues with survey items

could be identified. Cognitive interviewing is not a stand-alone method of item evaluation but

rather, a step before large scale testing to increase the likelihood of developing valid and reliable

survey items.

5.6 Conclusions

In preparation for the multi-centre validation study I conducted cognitive interviews with 30

injured patients and family members of injured patients to identify problems with survey items,

instructions and response options, and to assess the survey's content validity. Based on the

results, survey content and layout were revised. I also identified six broad issues with survey

items and revised the items accordingly. Awareness of the issues identified in my study may help

guide other researchers seeking to develop new measures of patient healthcare experience.

!37!

Chapter 6: Quantitative Validation of the Quality of Trauma Care Patient-Reported

Experience Measure (Sub-Study 2)

6.1 Background

Many instruments have been developed for assessing patients’ experiences or satisfaction with

healthcare however, few have been developed using rigorous standards and only a small number

report evidence of validity and reliability (27). Often, these tools are used to map the quality of

care or to assess the impact of a new intervention, both of which have implications for efforts to

improve the quality of care. However, the lack of evidence regarding the validity and reliability

of these measurement tools may undermine the results of studies that use them.

A few rigorously developed measures to obtain patient assessments of injury care have been

published however, they were developed only for specific patient populations (e.g. head injured

patients) and specific injury care services (e.g. rehabilitation services) (22, 23, 25). While this is

an important start to measuring patient experiences with injury care, measurement tools are

needed to capture the overall healthcare experiences of injured patients (3).

The overarching goal of this thesis was to produce a measure of patient injury care experiences

that could be used to guide quality improvement efforts. Tools used for quality improvement

should be valid (measure what they intend to measure), reliable (obtain similar results under

consistent conditions), and easy to implement. Therefore, the objective of this study was to

quantitatively assess the QTAC-PREM's validity, reliability, and feasibility of

implementation in a prospective cohort of injury patients in multiple trauma centres.

!38!

6.2 Specific Objectives

Objective 1: To test the psychometric properties (construct validity, test-retest reliability, internal

consistency) and feasibility of implementation of the QTAC-PREM in multiple trauma centers in

Alberta.

The secondary objectives of this study were:

Objective 2: To assess the convergent/divergent validity of the measure with the Hospital

Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey.

Objective 3: To examine survey responses to identify variations in patient experiences of injury

care and to identify potential areas of care that could be improved.

6.3 Methods/Design

This was a prospective cohort study of consecutive adult (age >16 years) patients admitted to

hospital due to injury. Injury was defined as “the physical damage that results when a human

body is suddenly subjected to energy in amounts that exceed the threshold of physiological

tolerance” (42) resulting in admission to hospital.

The survey measure was implemented at three trauma centres in the province of Alberta:

Foothills Medical Centre (level 1), University of Alberta Hospital (level 1), Chinook Regional

Hospital (level 3). Research coordinators conducted daily screening of patients admitted for

traumatic injuries in conjunction with trauma program coordinators and charge nurses.

!39!

6.3.1 Recruitment and Data Collection

Participants were approached once discharge planning had been initiated (planned discharge

within three days). Eligible participants were those admitted to hospital with a primary injury

diagnosis. Patients without a permanent telephone number were excluded. Patients that were

unable to understand and consent to study procedures were not eligible to complete the survey

measure themselves (e.g. head injured, certified psychiatric patients). In cases of uncertainty,

patient capacity to provide informed consent was determined using a modified version of the Aid

to Capacity Evaluation form (ACE) (Appendix B) (43). If a patient was unable to provide

informed consent (e.g. head injury), a family member was invited to participate by completing

the survey measure as a surrogate. Family members of patients admitted due to injury were

eligible if they visited their injured relative at least once in hospital. Family members of patients

who died during their hospital stay were excluded. If a patient was able to provide informed

consent, but preferred that a family member participate (e.g. too tired, nauseated etc.) one of their

family members was offered participation.

One in-hospital acute care survey measure was administered per consenting patient/family. To

assess test-retest reliability, consecutive participants were !approached to re-complete the survey

measure at least 24 hours after completion of the initial survey. Patients whose stay in hospital

was extended beyond their initial expected discharge date were still eligible to re-complete the

survey.

To assess convergent and divergent validity with the HCAHPS measure consecutive patients

were approached to complete the HCAHPS measure concurrently with the QTAC-PREM.

!40!

Administration of the HCAHPS began after the sample size for test-retest was obtained because

assessing convergent/divergent validity was a secondary objective and I did not want to

overburden respondents.

Follow-up telephone surveys were attempted with all consenting patients/surrogates

approximately 8-12 weeks post-hospital discharge. The same participant (patient or surrogate)

that completed the in-hospital survey was required to complete the follow-up survey. Family

members of patients previously unable to provide consent in-hospital were asked about the

condition of their recovering relative. When deemed appropriate (i.e. capacity potentially

regained), patients were contacted to assess their capacity to consent (using the modified version

of the ACE tool (43) and discuss their willingness to continue participation in the study (agree to

have surrogate complete the follow-up survey). Participants were deemed non-responders if they

had not answered after being phoned a minimum of 5 times and a period of 14 weeks had passed

since discharge. To assess test-retest reliability of the post-acute care measure it was

re-administered via telephone interview to consecutive participants 7–10 days after the initial

completion until the required sample size was reached (n = 75).

Participant demographic and clinical information was collected using the survey, as well as from

the trauma registry, to describe the sample of participants.

The acute care survey (patient/surrogate) and post-acute care survey (patient/surrogate) are

presented in Appendix C and Appendix D, respectively.

!41!

6.3.2 Sample size

The sample size was based on ensuring precision for test- retest reliability. Previous validation

studies on similar populations found survey item correlation estimates to be in the range of 0.65

to 0.85 (44). A test-retest sample size of 75 with an intra-class correlation (ICC) of 0.75

corresponds to 95% CI width of +/- 0.10. I planned to conduct re-tests on 25% of participants

(for both the acute care and post-acute care surveys) and estimated that 25% of participants

would decline requests for re-tests. Therefore, a sample size of 400 participants was required.

6.3.3 Data Analysis

Feasibility of Implementation

I examined the survey response rate to determine if implementing the measure is feasible in

multiple trauma centres. Characteristics of participants that responded to the post-acute survey

and those that did not respond were compared using student's t-test and chi-square tests to assess

respondent bias. Age, sex, injury severity, education, ethnicity, and mechanism of injury were

compared. The significance level was set at p<0.01 to decrease the likelihood of a type 1 error in

the presence of multiple testing.

6.3.3.1 Psychometric Assessments

Visual summary tables of the psychometric analyses were developed to indicate whether each

analysis provided evidence that was supportive (+) or unsupportive (-) of a valid and reliable

tool. Criteria for 'supportive' and 'unsupportive' results are described in each section.

!42!

Defining Validity and Reliability

The classic definition of the validity of an instrument is the extent to which the instrument

measures what it intends to measure (45). Validation of an instrument is an ongoing process and

consists of the continual testing of hypotheses. Hypotheses are developed based on the

assumption that the instrument is measuring what it intends to. Therefore, successful testing of a

hypothesis provides evidence of validity. There are many different 'accepted' types of hypotheses

used in the validation process. For example, if a new instrument purports to measure the risk of

future lung cancer, one could hypothesize that the results obtained using the new instrument

would be similar to existing, validated instruments that purport to measure the risk of lung cancer

(convergent validity). One could also develop hypotheses based on predicting future outcomes

(predictive criterion validity). For example, one could conduct a prospective cohort study and

test the hypothesis that those receiving higher scores on the new measure of lung cancer risk at

the beginning of the study would be more likely to develop the disease by the two year follow-up

time point. The strength of statements about an instruments validity depend on the scope and

rigor of testing. Therefore, different approaches were used to assess validity in this study. Each

approach is described (beginning with exploratory factor analysis) and includes a short

hypothesis indicating what was expected assuming that the QTAC-PREM measures patient

experiences with injury care.

Reliability can be broadly defined as the stability of a instrument or set of items. Reliability can

be assessed by comparing scores of an instrument administered multiple times (test-retest),

completed by multiple raters (inter-rater reliability), or by examining the scores of sets of items

within an instrument that are intended to measure the same thing (internal consistency). Ideally,

!43!

minimal variability would be observed within individuals between time-points (test-retest), for

different raters assessing the same participant (inter-rater), and between purportedly similar items

(internal consistency). Test-retest reliability and internal consistency were assessed in this study

and descriptions of each are provided in sections below (Cronbach's alpha for internal

consistency, test-rest reliability).

Exploratory Factor Analysis

Exploratory factor analysis was conducted to identify groups of empirically related items that

describe the same latent factor or 'domain'. This is an assessment of construct validity because

items that purport to measure the same thing will group together. Also, combining multiple items

into a smaller number of domains can simplify the reporting and interpretation of survey data.

Factor analyses were conducted using the principal factor method with squared multiple

correlations as estimates of the initial communality values and oblique rotation (promax), which

allows factors to correlate with one another. The number of factors was determined by

considering whether the eigenvalues were greater than 1 (46), the amount of variation explained

by each factor, and the interpretability of the resulting factor matrix. Items were assigned to the

factor they had the highest loading on. Items with factor loadings less than 0.3 were not assigned

(47). A complete case factor analysis was attempted for both the acute and post-acute surveys.

To perform this analysis individual dichotomous and ordinal item scores were transformed to

linear values on the standard normal distribution. Items on perceived unsafe care were not

included in the factor analysis. These were selected to act as stand-alone items for the purpose of

reporting.

!44!

Preliminary analyses showed that the effective sample size was reduced due to responses of 'not

applicable' (N/A) to select items. Factor analysis requires complete cases and therefore, an

answer of N/A to even a single item excluded a participant from inclusion in the analysis. As a

result, select items were excluded from the factor analysis to increase the available sample size

and confidence in this assessment of construct validity. Exclusion of items was based on two

judgments: (1) high number of N/A responses; (2) the potential for the item to form part of a

domain created based on face validity with other items that were not included or did not load

(<0.3) in the factor analysis. Items not included in a domain category were dubbed "stand-alone

items".

Cronbach's Alpha for Internal Consistency

Internal consistency was assessed to determine whether items within domains and within an

entire survey were homogeneous. High internal consistency is desirable as it indicates that

summary scores (domain or total survey scores) are reflective of the individual item scores

(within domains or the entire survey). Internal consistency for each domain and each survey was

assessed using Cronbach's Alpha. Alpha values should ideally fall between 0.70 (good) and 0.90

(excellent) (45) although 0.50 has been identified as a minimum acceptable value (48). To

perform this analysis, item scores were transformed to linear values on the standard normal

distribution.

Item-to-Domain Correlations

Corrected item-to-domain correlation coefficients were calculated to assess the homogeneity of

the items within each domain. Item-to-domain correlations indicate the importance of an item to

!45!

its domain. There is no agreed upon minimum value indicating importance of an item but

common rules of thumb range from 0.2 (45) to 0.4 (49). I chose a value of 0.3 as an indication of

the value on an item to its domain. To perform this analysis, individual dichotomous and ordinal

item scores were transformed to linear values on the standard normal distribution. Pearson

product-moment correlations were used as they are recommended for this analysis (45). It is

suggested that point biserial correlations are used for dichotomous items however, given the mix

of ordinal and dichotomous scales, this computation could not be completed (45).

Correlations Between Domains/Items and the Global Rating Item

Correlations between each domain/item and the global rating item were calculated to assess

construct validity (domains/items should correlate highly with the global rating). A mean of the

item scores was calculated for each domain and used as the summary domain value. This was

done to use all available data and obtain a domain score even if one item within the domain

received a response of 'not applicable'. Pairwise Spearman's rank correlation coefficients were

used to correlate ordinal items and the global rating item. The Bonferroni correction was used to

account for multiple testing. Point biserial correlations were used to assess the relationship

between dichotomous items and the global scale. For these correlations, the global scale was

assumed to have a continuous underlying distribution and was treated as a continuous variable.

Correlations were assessed for significance at the p<0.001 level.

Intercorrelations Between Domains

Intercorrelations between domains/stand-alone items were calculated to determine if they were

measuring distinct aspects of care. If correlations were above 0.70, the domains/stand-alone

!46!

items were considered to be redundant. A mean of the item scores was calculated for each

domain and used as the summary domain value. Pairwise Spearman's rank correlation

coefficients were used for ordinal stand-alone item and domain-domain correlations. Point

biserial correlations were calculated for dichotomous and domain/ordinal correlations. In these

cases, ordinal variables were assumed to have an underlying continuous distribution. The

pairwise method was used to make full use of all available data.

Regressions

Multivariate ordinal regression was used on acute and post-acute surveys to determine if

domains and select items were individually associated with the global rating item after adjusting

for scores on all other domains/items. The hypothesis behind this assessment was that patient

experiences (quantified by the domains/items) highly relevant to patients' perceptions of injury

care quality should be significantly and independently associated with the global rating item

(overall evaluation of the quality of care).

Relationships between domains/stand-alone items and the global score were assessed. A linear

mean of the item scores was calculated for each subscale and used as the summary subscale

value. To simplify the regression, the stand-alone item on unsafe care (not included in a domain

category in acute or post-acute survey) was collapsed to indicate whether unsafe care was

experienced (never versus sometimes, usually, always) and treated as a dichotomous predictor.

Stand-alone items with 0-10 scales were treated as linear predictors. The 0–10 global rating

scales were treated as ordinal outcome data however, the scale was collapsed to a three level

outcome: high quality score (9-10), middle quality (7-8), low quality (0-6) (50). This

!47!

categorization was made due to the fact that, in many of the attempted analysis, the number of

observations per outcome level was too small and eliminated the possibility of checking the key

assumption of ordinal regression: the proportional odds assumption. This assumption states that

the estimates yielded from an ordinal regression are proportional across each level (cut) of the

ordinal outcome. If this assumption is not met, the estimates do not accurately represent the data

and ordinal regression cannot be used. The proportional odds assumption was assessed using the

post-hoc Brant test in STATA. The three level outcome was chosen as this was the

categorization method used for presenting summary scores (Chapter 6.3.3.2) and has been used

in similar studies of well-validated surveys which utilized similar Likert and ordinal type scales

(38).

Regressions using item level data (i.e. 23 acute item predictors, 16 post-acute item predictors)

were attempted however, there were consistent issues with testing the assumption of proportional

odds, likely as the result of the reduction in sample size due to participants answering 'not

applicable' to one or more items. Although some analysis was possible using sub-sets of items

and adjusting for others using summary domain scores, I wanted to avoid conducting multiple

tests and drawing conclusions based on many sets of regression data. Therefore, item level

regressions were not completed.

Test-Retest Reliability

Test-retest reliability was assessed for items with ordinal scales (never-sometimes-usually-

always) using intra-class correlation coefficients calculated with a two-way random effects

model assessing absolute agreement (51). These items were assumed to have continuous

!48!

underlying distributions. Test-retest reliability for items with dichotomous scales (yes/no) was

assessed using Cohen's Kappa coefficient. Items answered 'not applicable' were not included in

the analysis. This resulted in small variations in the number of observations used to calculate

estimates for each item. There is no agreed upon standard for values of test-retest reliability and

what is considered 'good' varies slightly according to disciplines and the focus of measurement.

A common rule of thumb for good test-retest reliability is 0.70 (45, 49). Given the reduction in

sample size for some items I selected the cut-off 0.65 to indicate adequate reliability.

Convergent/Divergent Validity with the HCAHPS

Convergent/divergent validity of the acute care survey with the HCAHPS survey was assessed

using pairwise Spearman correlations. A mean of the item scores was calculated for each domain

on the QTAC-PREM and HCAHPS and used as the summary domain value. The pairwise

method was used to make full use of all available data. Spearman coefficients were used given

the presence of single ordinal items not included in the QTAC-PREM domain categories and the

ordinal nature of the data from which domain means were calculated. QTAC-PREM

domains/stand-alone items were expected to have higher correlations with similar domains on

the HCAHPS survey and lower correlations with domains assessing different aspects of care.

HCAHPS survey domains have been validated in previous studies (52).

6.3.3.2 Summary Scoring

Summary scores were examined to indicate whether the QTAC-PREM could be used to identify

variations in the quality of care from the patient perspective and to identify potential areas of

care that could be improved. Summary scores for each item and domain were calculated using a

!49!

method developed by the publishers of the HCAHPS (53). The three QTAC-PREM response

scales (yes/no, never-sometimes-usually-always, 0-10 rating) were categorized into high quality

(most positive), middle quality, and low quality (least positive) scores. High quality scores were

the most positive and included the 'yes' option of the dichotomous scale, the 'always' option of

the frequency scale (or 'never' for the two negatively worded items on receiving unsafe care and

unfair treatment), and '9-10' on the global rating scale. Middle quality scores included 'usually'

on the frequency scale and '7-8' on the global rating scale. Low quality scores included 'no' on

the dichotomous scale, 'sometimes' and 'never' on the frequency scale, and '0-6' on the global

rating scale. These categorizations were developed to simplify the process of reporting survey

results (50). The percentage of high-, middle-, and low- quality responses were calculated for

each item. These were averaged to produce the percent of high-, middle-, and low- quality

responses for each domain. Items answered with N/A were not included in the calculation.

6.3.3.3 Acute Care and Post-Acute Care Global Rating Comparison

Scores of the single global rating items were compared for patients that completed both surveys

to assess differences in overall acute and post-acute care. I used ordinal regression using the

global scores as an ordinal outcome. The full outcome scale could not be used as the low number

of observations in several of the outcome categories precluded the assessment of the proportional

odds assumption. Therefore, the outcome was categorized into a three level outcome (high-,

middle-, and low- quality). Time of completion (acute = time 1, post-acute = time 2) was entered

as a predictor variable. Two potential covariates were entered into the model. Health status was

assessed on the acute and post-acute survey. The change in health status from time 1 to time 2

was entered as a covariate as it is possible that ratings on the post-acute survey may partially

!50!

reflect increases/decreases in health status. Health status has been shown to impact evaluations of

patient experiences (54). The length of time between completion of the acute and post-acute

survey was also entered as a covariate because time between survey completion and the last

healthcare encounter has been shown to influence patient evaluations of care (54). I anticipated

that some participants would have finished their follow-up care by the date of post-acute survey

completion while others would still be attending appointments. A significance level of p<0.05

was selected for this analysis.

6.4 Results

Feasibility of Implementation (Figure 1, Table 10)

Figure 2 shows the details of participant enrollment and study flow. Across the three study sites,

512 patients/surrogates were approached, of which 400 returned completed surveys (78%

response rate). Of the 400 acute participants, 350 agreed to the post-acute survey and 190

telephone interviews were completed (54% response rate). At the time of post-acute survey

completion 34% of participants had attended a follow-up with one provider, 36% with two

providers, and 30% with three providers. Eighty-five percent of participants had more follow-up

appointments scheduled.

Table 10 shows characteristics of participants in the study. Patients were primarily male (70%)

and injured in motor-vehicle collisions (43%). Injury severity data was only available for 144

patients (remainder to be abstracted). Of those 144, 56% had major injuries (injury severity

score>12) with a median ISS of 20 and an interquartile range (IQR)=16, 27. Five percent of

!51!

responders were surrogates that were primarily female (83%) and most commonly the patient's

wife (33%), mother (25%), or daughter (17%).

512 patients approached

400 completed acute care surveys

457!consented!

78% response rate

78 retests

350 consented to follow-up survey

190 completed post-acute care

surveys

88% follow-up consent

54% response rate

76 retests

Figure 1. Participant enrollment and study flow !

!52!

Table 10. Prospective cohort study participant characteristics Participant Characteristics [n=400]

Patients 95% (387) Male 70% Age, median years (IQR) 45 (27, 58) Ethnicity Caucasian 75% Asian/East Indian 9% Aboriginal/First Nations 7% Education High school or less 46% Some college or more 54% Residence Alberta 89% Urban 81% Mechanism of injury Motor vehicle 43% Fall 38% Assault 12% Acute care self rated health Poor, fair, or good 66% Very good or excellent 34% Post-Acute care self rated health Poor, fair, or good 74% Very good or excellent 23% Clinical Characteristics n=144 ISS<12 44% ISS>12 ISS, median (IQR)

56% 20 (16, 27)

Surgery during hospital staya 25% Intensive care unit admission during hospital staya 13% Hospital length of stay, median (IQR) b 8 (5, 17) Survey Information Days between acute and follow-up survey, median (full range) 83 (75, 90) Surrogates 5% (22) Female 83% Age, median years (IQR) 52 (36, 58) Relationship to patient Wife 33% Mother 25% Daughter 17% Education High school or less 38% Some college or more 62% aData for 144 Foothills patients currently available in the trauma registry. b200 foothills patients only.

!53!

Comparisons of post-acute responders versus non-responders showed no significant differences

in sex, injury severity, education, or ethnicity. However, there was a significant difference in age

(p=0.002) with older people more likely to respond to the post-acute survey. The mean age of

respondents was 48 (95%CI=46-51) compared to 40 for non-respondents (95%CI=36-43). There

was also a significant difference in the distribution of injury mechanism among post-acute

responders compared to non-responders (p=0.005). Patients that did not complete the post-acute

survey were more likely injured due to an assault (21% versus 5%).

Item level response distributions are shown for the acute survey in Appendix E and the post-

acute survey in Appendix F. Overall, there was very little missing data. There was variation in

the distributions of responses to each item. A select number of items received moderate to high

percentages of 'not applicable' responses (acute items: 20-helped with difficulty breathing,

21-helped with agitation, 29-religious preferences respected; post-acute items: 13-addressed

concerns, 14-information consistent, 5-received support services, 16-information sent to family

physicians or GP, 8b- difficulty getting appointments with family physician or GP, 8c-difficulty

getting appointments with physio, rehab, or occupational therapists).

6.4.1 Psychometric Assessments (Table 11, Table 12)

Table 11 and Table 12 show visual summaries of the psychometric analyses and indicate whether

the results were supportive (+) or unsupportive (-) of the validity and reliability of the tool.

!

Table 11. Acute care sum

mary of results of psychom

etric analyses

Validity

Reliability

Acute Survey D

omains

Items

Factor A

nalysis R

egression C

onvergent/D

ivergent Item

/Dom

ain-G

lobal C

orrelation

Internal C

onsistency Item

-D

omain

Correlations

Test-Retest

Reliability

Com

munication and Inform

ation +

+

+/+

+ +

9. Understandable explanations

+ +

+ +

10. Injuries explained +

+ +

- 14. Inform

ation consistent +

+ +

+ 15. Explained transfers

+ -

- +

17. Explained unit landmarks

+ +

+ +

Discharge Inform

ation +

+

+/+ +

+

11. Explained affect of injuries

+ +

+ -

12. Explained instructions for injuries +

+ +

- 13. Explained recovery tim

eline +

+ +

+ C

linical and Ancillary A

spects of Care

+ +

+/+

+ +

16. Com

fortable during transfers +

+ +

+ 18. Pain w

ell controlled +

+ +

+ 19. H

elped with pain

+ +

+ -

20. Helped w

ith difficulty breathing +

+ +

- 21. H

elped with agitation

+ +

+ +

22. Handled carefully

+ +

+ -

23. Helped w

ith hygiene +

+ +

+ 24. Providers explained their roles

+ +

+ +

25. Addressed concerns

+ +

+ +

27. Dignity considered

+ +

+ -

30. Treated unfairly +

+ -

- Supportive A

spects of Care

- -

-/+ +

-

26. O

ffered emotional support

+

- +

29. Religious preferences respected

- +

- -

28. Perceived Unsafe C

are

- +

+

+

31. Global R

ating

+

+

(+) Supportive results. (-)Unsupportive results. B

lank spaces indicate no result achieved.

!55!

Table 12. Post-acute care summ

ary of results of psychometric analyses

V

alidity R

eliability

Post-Acute Survey D

omains

Items

Factor A

nalysis R

egression Item

/Dom

ain-G

lobal C

orrelation

Internal C

onsistency Item

-Dom

ain C

orrelations Test-R

etest R

eliability

Discharge Preparedness

+ -

+ -

2. Received w

ritten discharge instructions +

- -

+ 3. U

seful discharge instructions

-

+ 5. R

eceived support services +

+ -

+ C

omm

unication, Information, and G

uidance +

+

+ +

9. Explained next steps in recovery +

+ +

+ 10. R

ecovery timeline described

+ +

+ -

11. Received all inform

ation wanted

+ +

+ +

12. Understandable explanations

+ +

+ +

13. Addressed concerns

+ +

+ +

14. Information consistent

+ +

+ +

17. Guidance through post-discharge recovery

+ +

+ +

Appointm

ent Scheduling

-

- -

Difficulty getting appointm

ents with a...

8a. Trauma doctor, surgeon, or specialist

-

- +

8b. Family physician or general practitioner

-

- +

8c. Physio, rehab, or occupational therapist

- -

+ 4. Pain M

anagement

- -

-

+

15. Perceived unsafe care

-

-

16. Fam

ily Physician Informed

- +

+

+

18. Global rating

+

(+) Supportive results. (-)Unsupportive results. B

lank spaces indicate no result achieved.

!

Exploratory Factor Analysis (Table 13, Table 14)

A three factor solution was selected for the acute care factor analysis. The three factors had

unrotated eigenvalues of 6.7, 1.6, and 0.95. Although the third factor did not have an eigenvalue

greater than one, the three factor model was selected due to the amount of cumulative variance

accounted for (88%) and the interpretability of the results. One item was not included in the

analysis (religious preferences considered) because 55% of participants answered 'not

applicable'. A sample size of 97 was used in the analysis. Table 13 shows the domains (factors)

yielded from the analysis with corresponding items, their factor loadings, and their unique

variance not accounted by the common factors. The three domains obtained in the analysis were

labeled communication and information; discharge information; clinical and ancillary aspects of

care. Clinical and ancillary aspects of care appeared to describe clinical processes from the

patient perspective including the delivery of physical care (comfort, pain management) and

secondary issues relevant to clinical processes including being treated fairly, having concerns

addressed, and being able to identify members of the care team. Correlations between the rotated

factors were 0.23, 0.29, and 0.43, suggesting small to moderate overlap among the domains. The

domain 'supportive aspects of care' was created based on face validity using items that did not

load or were not included in the factor analysis.

!57!

Table 13. Results of the acute care factor analysisa. Acute Survey Domains Items

Factor Loadings Uniqueness of Error

Communication and Information 9. Understandable explanations 0.46 0.63 10. Injuries explained 0.74 0.49 14. Information consistent 0.48 0.53 15. Explained transfers 0.33 0.83 17. Explained unit landmarks 0.31 0.71 Discharge Information 11. Explained affect of injuries 0.72 0.42 12. Explained instructions to care for injuries 0.71 0.50 13. Explained recovery timeline 0.61 0.54 Clinical and Ancillary Aspects of Care 16. Comfortable during transfers 0.74 0.56 18. Pain well controlled 0.40 0.63 19. Helped with pain 0.49 0.44 20. Helped with difficulty breathing 0.74 0.44 21. Helped with agitation 0.76 0.28 22. Handled carefully 0.75 0.35 23. Helped with hygiene 0.74 0.45 24. Providers explained their roles 0.57 0.63 25. Addressed concerns 0.67 0.45 27. Dignity considered 0.69 0.33 30. Treated unfairly 0.40 0.71 Supportive Aspects of Careb (face validity) 26. Offered emotional support * 0.79 29. Religious preferences respected ** 28. Perceived Unsafe Care ** an=97. bDomain created based on face validity to accommodate item 26 and item 29. *Item did not load on any factor. **Item not included in the factor analysis.

A two factor solution was selected for the post-acute care factor analysis. The two factors had

unrotated eigenvalues of 2.5 and 0.70. Although the second factor did not have an eigenvalue

greater than one, the two factor model was selected due to the amount of cumulative variance

accounted for (97%) and the interpretability of the results. Three items on difficulties getting

follow-up appointments were excluded (8a-trauma doctor, surgeon, specialist; 8b-family

physician, general practitioner; 8c-physio, rehab, or occupational therapist). Two of the items

had almost zero variance (all answered 8b & 8c 'yes'), which caused a conformability error. All

three were excluded from the analysis to form a domain based on face validity: appointment

!58!

scheduling. Collinearity between item 2 and item 3 resulted in item 3 being dropped from the

analysis (fewer participants answered item 3; dropped to increase sample size). A sample size of

57 was used in the analysis. Table 14 shows the domains yielded from the analysis with

corresponding items, their factor loadings, and their unique variance not accounted for by the

common factors. The two domains obtained in the analysis were labeled discharge preparedness

and communication, information, and guidance. The correlation between the domains was 0.45.

Items on pain management and the amount of information transferred between the hospital and

the patient's family physician did not load on any factors.

Table 14. Result of the post-acute care factor analysisa. Post-Acute Survey Domains Items

Factor Loadings Uniqueness of Error

Discharge Preparedness 2. Received written discharge instructions 0.66 0.64 3. Useful discharge instructions ** ** 5. Received support services 0.53 0.74 Communication, Information, and Guidance 9. Explained next steps in recovery 0.49 0.61 10. Described recovery timeline 0.41 0.87 11. Received all information wanted 0.48 0.80 12. Understandable explanations 0.68 0.57 13. Addressed concerns 0.55 0.62 14. Information consistent 0.53 0.75 17. Guidance through post-discharge recovery 0.59 0.41 Appointment Schedulingb Difficulty getting appointments with a... 8a. Trauma doctor, surgeon, or specialist ** 8b. Family physician or general practitioner ** 8c. Physio, rehab, or occupational therapist ** 4. Pain Management * 0.97 15. Perceived Unsafe Care ** . 16. Family Physician Informed * 0.90 an=57. bDomain created based on face validity to accommodate item 8a, item 8b, and item 8c. *Item did not load on any factor. **Item not included in the factor analysis.

!59!

Cronbach's Alpha for Internal Consistency

Table 15 shows results for the internal consistency analysis. Cronbach's alpha was excellent for

the acute care measure as a whole (0.92) and good for the post-acute care measure (0.72)

Item-to-Domain Correlations

All acute care corrected item-to-domain correlations were 0.30 or higher with the exception of

four items (15-transfers explained, 30-treated unfairly, 26-offered emotional support, 29-

religious preferences respected) (Table 16). Post-acute care item-to-domain correlations were

0.30 or higher among items in the domain communication, information and guidance. No items

in the other two domains were higher than 0.30 (Table 17).

Table 15. Internal consistency for survey domains and each overall measure Survey

Domains Cronbach's

Alpha Denominators a

Acute Care Survey (n=400) Communication and Information 0.63 295 Discharge Information 0.76 283 Clinical and Ancillary Aspects of Care 0.88 156 Supportive Aspects of Care 0.35 119 Acute Care Measure 0.92 60

Post-Acute Care Survey (n=190) Discharge Preparedness 0.41 121 Communication, Information, and Guidance 0.84 107 Appointment Scheduling 0.21 75 Post-Acute Care Measureb 0.72 42 aDenominators varied based on number of complete cases within each domain. bDoes not include item 3 or 15 as they were "constant in the analysis" (i.e. no variation).

!60!

Correlations Between Domains/Items and the Global Item

All domains and items on the acute survey were significantly associated (p<0.001) with the

global item, with the exception of the item 'explained transfers' (Table 16). The majority of post-

acute items were significantly associated (p<0.001) with the global item however, non-

significant correlations were found for the domain (and items within) appointment scheduling,

and the items about pain management, perceived unsafe care, whether patients received

discharge instructions and useful discharge instructions (Table 17).

Intercorrelations Between Domains [not included in summary table]

Correlations among acute care domains and stand-alone items were moderate (0.09 - 0.59, most

above 0.30), while correlations among post-care care domains and stand-alone items were low to

moderate (0.00 - 0.35). None were redundant (>0.7).

!

Table 16. Acute care item-to-domain correlations and domain/item to global correlations Acute Survey Domains Items

Item-to-Domain Correlationa

Denominator (n=400)b

Domain/Item-to-Global

Correlation c Denominator (n=400)d

Communication and Information n=295 0.52* 9. Understandable explanations 0.48 0.46* 10. Injuries explained 0.41 0.34* 14. Information consistent 0.44 0.47* 15. Explained transfers 0.25 0.16 17. Explained unit landmarks 0.33 0.31* Discharge Information n=283 0.34* 11. Explained affect of injuries 0.68 0.35* 12. Explained instructions to care for injuries 0.59 0.29* 13. Explained recovery timeline 0.51 0.19* Clinical and Ancillary Aspects of Care n=156 0.67* 16. Comfortable during transfers 0.50 0.36* 18. Pain well controlled 0.48 0.50* 19. Helped with pain 0.65 0.51* 20. Helped with difficulty breathing 0.68 0.43* 21. Helped with agitation 0.73 0.57* 22. Handled carefully 0.72 0.44* 23. Helped with hygiene 0.57 0.40* 24. Providers explained their roles 0.52 0.44* 25. Addressed concerns 0.62 0.55* 27. Dignity considered 0.68 0.44* 30. Treated unfairly 0.29 0.28* Supportive Aspects of Care n=119 0.25* 26. Offered emotional support 0.21 0.23* 29. Religious preferences respected 0.21 0.25* 28. Perceived Unsafe Caree . 0.34* aPearson product-moment correlations corrected for overlap. bDenominators varied based on the number of complete cases within each domain/item. c Spearman correlations (including Bonferroni correction to account for multiple testing) and point biserial correlations. dDenominators varied from n=172 to n=399. eStand-alone item not included in a composite domain.*Significant at the p<0.001 level.

!

Table 17. Post-acute care item-to-domain score correlations and domain/item to global correlations Post-Acute Survey Domains Items

Item-to-Domain Correlationa

Denominator (n=190)b

Domain/Item-to-Global

Correlationc Denominator

(n=190) d Discharge Preparedness n=121 0.34* 2. Received written discharge instructions 0.25 0.24 3. Useful discharge instructionse . 0.15 5. Received support services 0.25 0.34* Communication, Information, and Guidance n=107 0.72* 9. Explained next steps in recovery 0.63 0.54* 10. Recovery timeline described 0.42 0.31* 11. Received all information wanted 0.59 0.49* 12. Understandable explanations 0.64 0.43* 13. Addressed concerns 0.57 0.45* 14. Information consistent 0.62 0.37* 17. Guidance through post-discharge recovery 0.76 0.78* Appointment Scheduling n=83 0.21 Difficulty getting appointments with a... 8a. Trauma doctor, surgeon, or specialist 0.16 0.17 8b. Family physician or general practitioner 0.15 0.14 8c. Physio, rehab, or occupational therapist 0.08 0.19 4. Pain Management f . 0.25 15. Perceived Unsafe Care e, f . 0.05 16. Family Physician Informed f . 0.44* aPearson product-moment correlations corrected for overlap. bDenominators varied based on the number of complete cases within each domain/item. cSpearman correlations (including Bonferroni correction to account for multiple testing) and point biserial correlations. dDenominators varied from n=118 to n=190. e Item not included in calculated correlations due non-variability. fStand-alone item not included in a composite domain. *Significant at the p<0.01 level.

Regressions

The acute care domain/stand-alone item regression included 367 observations. Thirty-three

participants either answered N/A to the item on 'unsafe care' or N/A to all items within a domain

and were therefore excluded from the analysis. Three of the acute care domains were

significantly associated with scores on the global rating item: communication and information

(p=0.006), discharge information (p=0.001), clinical and ancillary aspects of care (p<0.001).

!63!

The remaining domain supportive aspects of care (p=0.09) and the stand-alone item on 'unsafe

care' (p=0.112) did not have significant associations. The proportional odds assumption was met.

The post-acute care domain/stand-alone item regression included 107 observations. Eighty-three

participants either answered N/A to one of the stand-alone items or to all items within a domain

and were therefore excluded from the analysis. The composite domain communication,

information, and guidance (p<0.001) and stand-alone item 'family physician informed' (item 16)

(p=0.008) were significantly associated with scores on the global rating item. The two other

composite domains discharge preparedness (p=0.435) and appointment scheduling (p=0.109)

and the other two stand alone items 'perceived unsafe care' (p=0.809) and 'pain management'

(p=0.238) did not have significant associations. The proportional odds assumption was met.

Appendix G and Appendix H show outputs of the regressions for acute and post-acute care

surveys, respectively.

Test-Retest Reliability

Table 18 (acute) and Table 19 (post-acute) show estimates for test-retest reliability. On the acute

survey, estimates ranged from 0.42 to 0.88 with 61% of items achieving coefficients above 0.65.

On the post-acute survey, estimates ranged from 0.55 to 1.00 with 94% of items achieving

coefficients above 0.65. Global ratings on the acute (0.85) and post-acute survey (0.90) had

excellent reliability. The median acute retest interval was 2 days (IQR= 1, 3) with a total range of

1 to 14 days, while the median post-acute retest was 8 days (IQR=8, 12) with a total range of 4 to

30 days.

!64!

Table 18. Acute care test-retest reliability estimates Acute Survey Domains Items

Reliability Coefficient (95% CI)a

Denominator (n=78)b

Communication and Information 9. Understandable explanations 0.68 (0.54 - 0.78) 77 10. Injuries explained 0.51 (0.13 - 0.88)c 71 14. Information consistent 0.78 (0.68 - 0.85) 78 15. Explained transfers 0.85 (0.57 - 1.00) c 71 17. Explained unit landmarks 0.75 (0.56 - 0.96) c 66 Discharge Information 11. Explained affect of injuries 0.43 (0.19 - 0.68) c 63 12. Explained instructions to care for injuries 0.64 (0.41 - 0.86) c 56 13. Explained recovery timeline 0.69 (0.45 - 0.94) c 63 Clinical and Ancillary Aspects of Care 16. Comfortable during transfers 0.85 (0.77 - 0.90) 73 18. Pain well controlled 0.72 (0.59 - 0.81) 76 19. Helped with pain 0.55 (0.37- 0.69) 76 20. Helped with difficulty breathing 0.57 (0.35 - 0.73) 49 21. Helped with agitation 0.71 (0.55 - 0.82) 54 22. Handled carefully 0.64 (0.48 - 0.76) 71 23. Helped with hygiene 0.68 (0.52 - 0.79) 65 24. Providers explained their roles 0.78 (0.67 - 0.85) 78 25. Addressed concerns 0.68 (0.52 - 0.80) 60 27. Dignity considered 0.57 (0.39 - 0.70) 76 30. Treated unfairly 0.44 (0.24 - 0.61) 75 Supportive Aspects of Care 26. Offered emotional support 0.81 (0.68 - 0.95) c 75 29. Religious preferences respected 0.42 (0.03 - 0.70) 23 28. Perceived Unsafe Care 0.88 (0.82 - 0.92) 77 31. Global Rating 0.85 (0.77 - 0.90) 78 aIntraclass correlation coefficient unless otherwise indicated. b Denominators varied for each item. cCohen's Kappa coefficient.

!65!

Table 19. Post-acute care test-retest reliability estimates Post-Acute Survey Domains Items

Reliability Coefficient (95% CI)a

Denominator (n=76)b

Discharge Preparedness 2. Received written discharge instructions 0.77 (0.61 - 0.93)c 69 3. Useful discharge instructions 0.65 (0.20 - 1.00)c 43 5. Received support services 0.94 (0.82 - 1.00)c 51 Communication, Information, and Guidance 9. Explained next steps in recovery 0.71 (0.52 - 0.91)c 72 10. Recovery timeline described 0.55 (0.35 - 0.76)c 72 11. Received all information wanted 0.65 (0.42 - 0.87)c 72 12. Understandable explanations 0.69 (0.55- 0.80) 71 13. Addressed concerns 0.74 (0.58 - 0.84) 54 14. Information consistent 0.73 (0.58 - 0.84) 51 17. Guidance through post-discharge recovery 0.86 (0.79 - 0.91) 73 Appointment Scheduling Difficulty getting appointments with a... 8a. Trauma doctor, surgeon, or specialist 0.83 (0.64 - 1.00)c 60 8b. Family physician or general practitioner 1.00 (1.00 - 1.00)c 60 8c. Physio, rehab, or occupational therapist 0.65 (0.20 - 1.00) c 55 4. Pain Management 0.90 (0.77 - 1.00) 61 15. Perceived Unsafe Care 0* 16. Family Physician Informed 0.87 (0.78 - 0.92) 53 18. Global Rating 0.90 (0.83 - 0.94) 73 aIntraclass correlation coefficient unless otherwise indicated. b Denominators varied for each item. cCohen's Kappa coefficient. *Zero-variance.

Convergent/Divergent Validity with the HCAHPS

Forty-one participants completed both the QTAC-PREM and HCAHPS. Table 20 shows the

correlation matrix between QTAC-PREM domains/stand-alone items and the HCAHPS

domains/stand-alone items. The pattern of correlations indicated evidence of divergent and

convergent validity. Similar domains were correlated more highly than non-similar domains.

Some correlations seemed nonsensical but item level analysis (item correlation matrix in

Appendix I) showed appropriate convergent validity. For example, the clinical and ancillary

aspects of care domain correlated most highly with the HCAHPS domain communication with

!66!

nurses. The nursing communication domain included an item on whether nurses treated patients

with courtesy and respect (item H1), which reflects the nature of patient interactions with nurses.

This item correlated most highly with items in the QTAC-PREM domain clinical/ancillary care

that addressed the nature with which care was delivered: 27-considering patient dignity and 30-

being treated fairly.

Table 20. Spearman correlation coefficients between QTAC and HCAHPS domains/stand alone itemsa

HCAHPS Domains

QTAC-PREM Domains Communication and Information

Discharge Information

Clinical and Ancillary Aspects of

Care

Supportive Aspects of

Care

Perceived Unsafe Care

Global Rating

Communication with Nurses 0.22 0.13

0.63

0.18

0.29

0.48

Communication with Physicians 0.21 0.27

0.37

-0.07

0.34

0.28

Staff Responsiveness 0.01 -0.14

0.37 0.12 0.33 0.30

Pain Management 0.08 0.11

0.55 0.19 0.34 0.55

Medication Information 0.33 0.25

0.37

0.18

0.45

0.18

Discharge Information 0.16 0.24

0.03 0.09 -0.12 0.01

Cleanliness of Hospital -0.20 -0.15

0.11

0.13

0.26

0.21

Quietness of Hospital -0.02 -0.01

0.12

0.31

-0.26

0.10

Recommend Hospital 0.09 0.35

0.36 0.21 0.09 0.50

Global Rating 0.21 0.15 0.48 0.13 0.44 0.51 a n=41 participants. Single item global ratings are italicized. The highest 3 correlations in each column are bolded, not including correlations with global rating items.

6.4.2 Summary Scores

The categorized response distributions showed variation in ratings of acute and post-acute care

(Table 21, Table 22). The frequency of high quality responses ranged from 36% to 96% on acute

survey items and 40% to 97% on post-acute survey items while low quality responses ranged

!67!

from 3% to 56% in acute care and 3% to 34% in post-acute care. The items receiving the most

high quality ratings in acute care were "injury explanations" (93%) and "transfer explanations"

(96%) while those receiving the most low quality ratings were "offered emotional support"

(56%) and "effect of injuries explained" (26%). Fourteen percent of participants reported

experiencing an unsafe act of care (Table 21). The items receiving the most high quality ratings

in post-acute care were "perceived unsafe care " (97%) and "getting appointment with physio,

rehab or occupational therapists" (96%) while those receiving the most low quality ratings were

"family physician informed" (34%) and "recovery timeline described" (33%).

Global Ratings of Acute Care Compared to Post-Acute Care

Among those completing both surveys, global ratings of the quality of acute injury care were

significantly higher than global ratings for post-acute care (top-box 62% vs. 46%, middle-box

28% vs. 36%, low-box 10% vs. 18%, p=0.02).

!68!

Table 21. Acute care item and domain summary scores Acute Care Domains Items

Summary Response Categories Denominatorb

(n=400) % Low Quality

% Middle Qualitya

% High Quality

Communication and Information 12 16 72 9. Understandable explanations 10 33 57 399 10. Injuries explained 7 0 93 379 14. Information consistent 17 47 36 396 15. Explained transfers 4 0 96 355 17. Explained unit landmarks 22 0 78 340 Discharge Information 22 0 78 11. Explained affect of injuries 26 0 74 350 12. Explained instructions to care for injuries 22 0 78

320

13. Explained recovery timeline 19 0 81 349 Clinical and Ancillary Aspects of Care 11 26 63 16. Comfortable during transfers 7 33 60 380 18. Pain well controlled 13 38 49 396 19. Helped with pain 7 25 68 397 20. Helped with difficulty breathing 6 15 79 250 21. Helped with agitation 18 34 48 292 22. Handled carefully 6 26 68 370 23. Helped with hygiene 19 30 51 360 24. Providers explained their roles 11 26 63 398 25. Addressed concerns 17 29 54 322 27. Dignity considered 12 26 62 390 30. Treated unfairly 3 6 91 395 Supportive Aspects of Care 37 5 58 26. Offered emotional support 56 0 44 381 29. Religious preferences respected 18 10 72 172 28. Perceived Unsafe Care 3 11 86 394 31. Global Rating 9 31 60 399 aSome items did not include a middle-quality option. bDenomintors vary as participants answering N/A or not able to answer were excluded.

!69!

Table 22. Post-acute care item and domain summary scores Post-Acute Domains Items

Summary Response Categories Denominatorb

(n=190) % Low Quality

% Middle Qualitya

% High Quality

Discharge Preparedness 14 0 83 2. Received written discharge instructions 26 0 74 180 3. Useful discharge instructions 9 0 91 133 5. Received support services 17 0 83 127 Communication, Information, and Guidance 21 15 64 9. Explained next steps in recovery 19 0 81 181 10. Recovery timeline described 33 0 67 181 11. Received all information wanted 19 0 81 182 12. Understandable explanations 16 23 61 181 13. Addressed concerns 19 21 60 146 14. Information consistent 17 28 55 126 17. Guidance through post-discharge recovery 23 37 40

189

Appointment Scheduling 7 0 93 Difficulty getting appointments with a... 8a. Trauma doctor, surgeon, or specialist 13 0 87 159 8b. Family physician or general practitioner 5 0 95 144 8c. Physio, rehab, or occupational therapist 4 0 96 118 4. Pain Management 20 0 80 164 15. Perceived unsafe care 3 0 97 179 16. Family Physician Informed 34 21 45 124 18. Global rating 18 36 46 188 aSome items did not include a middle-box option. bDenomintors vary as participants answering N/A or not able to answer were excluded.

!70!

6.5 Discussion

This prospective cohort study was conducted to assess the validity, reliability, and feasibility of

implementation of the QTAC-PREM in multiple trauma centres in Alberta. Four hundred injury

patients completed the acute care survey component and 190 completed the follow-up post-acute

care component. The survey was assessed for construct validity, test-retest reliability, internal

consistency, and convergent/divergent validity with an existing patient experience measure.

Survey results were also examined to determine if the tool could be used to identify variations in

patient quality of care evaluations.

The study results show that measuring patient injury care experiences is feasible in multiple

trauma centres. Seventy-eight percent of all patients/surrogates approached returned completed

acute care surveys and 54% of consenting participants completed post-acute surveys. Loss to

follow-up has been identified as a serious issue in trauma outcomes research and there is no

establish standard for which to compare (55). However, the follow-up rate in this study is

comparable (54% vs. 60%) to The National Study on Costs and Outcomes of Trauma

(56), a landmark trauma study which included follow-up telephone calls with patients at

3-months and 12-months post-discharge.

The results have provided evidence of validity and reliability for the majority of survey items.

Refer to Table 11 and Table 12 for summary results.

For the purpose of quality improvement, it is likely that item level data will be used as this is

more specific and actionable. However, factor analysis was conducted to provide insight into the

!71!

construct validity of items and to identify which items could be grouped into domains. Domain

level information can ease interpretation and reporting (50).

Although the factor analysis yielded five domains (three acute, two post-acute), based on the

host of analyses conducted, four domains have sufficient evidence to be reported in composite

scores (domains). The acute care survey includes three composite domains (communication and

information, clinical and ancillary aspects of care, discharge information) while the post-acute

survey includes one composite domain (communication, information, and guidance). Construct

validity for the items was provided by the factor analysis and item to global score correlations.

Also, each of these four domains was a strong predictor of the global rating of the quality of

injury care after accounting for scores on other items. The items in these domains showed

adequate internal consistency (Cronbach's Alpha) and nearly all were homogenous, without

being redundant.

The domain discharge preparedness was obtained through the factor analysis however, item

scores for this domain likely should be reported individually due to low internal consistency and

item-domain correlations. The domain was a predictor of the global rating in the regressions and

two items within the domain had significant (p<0.001) or near significant (p=0.0016)

correlations with the global score. These items will be retained. One item (item 3) may be

deleted due to limited evidence of validity.

The domains developed based on face validity (supportive aspects of care, appointment

scheduling) showed poor internal consistency and low item-domain correlations, which suggests

!72!

they do not measure similar constructs. The item on religious preferences (supportive aspects of

care) also showed low test-retest reliability and was only applicable to 55% of respondents.

Therefore, this item may be eliminated. Of the remaining items in these domains, only 'emotional

needs considered' had evidence of construct validity and it will be retained. The other three items

on 'difficulties getting appointments' are tagged for deletion.

The single items on 'perceived unsafe care' were left out of the acute and post-acute factor

analysis. The acute safety item had evidence of construct validity and test-retest reliability.

However, among complete cases, the post-acute safety item had no variability, which limited

analysis of this item. Overall, 3% of participants reported unsafe care in the post-discharge phase

and 14% reported an incident during acute care. These items will be published with the full-

length tool as they may be useful for trauma centres and researchers that seek to study the safety

of their care while including the patient perspective. A future study could assess concordance of

patient reports of unsafe care with other methods of safety incident detection to further validate

the items. There are very few published measures with close-ended items to elicit patient reports

of unsafe care (57).

Correlations among the acute care domains/stand-alone items were low to moderate, which

suggests they measure distinct aspects of care and are not redundant.

The majority of items on the surveys assessed in this study had adequate levels of test-retest

reliability. A few items on the acute survey did fall below the acceptable level selected a priori.

This may, in part, be due to the dynamic nature of acute care. The administration timeline for this

!73!

survey necessitated enrolling patients 1-2 days (or more) prior to discharge to allow the

opportunity for an in-hospital retest. Therefore, healthcare events could have occurred between

the first and second completion that influenced patient evaluations of their care and subsequently

the reliability estimates. However, if implemented as a quality improvement tool, administration

of the survey would occur at discharge, after all acute care had been received, and the underlying

constructs would be more stable. Despite this challenge, most items were found to be reliable.

Future studies may need to explore post-hospital administration of the acute care instrument to

re-evaluate test-retest reliability in a sub-set of acute care items that had lower reliability

coefficients in this study. The two items on the post-acute survey with low retest reliability are

candidates for deletion.

This is the first study to report validity and reliability for a measure developed to assess patient

experience with overall injury care. There are a small number of validated surveys used to assess

hospital experience (most notably the HCAHPS) however, they were developed to assess general

hospital care experiences. The acute care component of the QTAC-PREM also targets hospital

experience but was developed to focus on a collection of elements key for injury patients. A

secondary objective of this study addressed the convergent and divergent validity of the QTAC-

PREM with the HCAHPS. Overall, the correlation pattern of the acute care survey and the

HCAHPS suggested appropriate convergent and divergent validity. For the most part, similar

domains correlated more highly than non-similar domains. The magnitudes of the correlations

were primarily low to moderate (all less than 0.63, most less than 0.40), with high correlations

!74!

occurring only in the clinical and ancillary aspects of care domains. This suggests the surveys

are not redundant.

Another secondary objective of this study was to determine whether the QTAC-PREM could

operate to identify variations in patient ratings of care and identify areas of care that could be

improved. The response distributions and summary scores (high-, medium-, low- quality)

showed there is variation in injury patients' evaluations of care. The overall rating of post-acute

care was found to be significantly lower than acute care, suggesting lower quality of care after

discharge. The results suggest there may be opportunities to improve elements of in-hospital

clinical care including pain control, treatment of agitation, and addressing patient concerns

(responsiveness); the clarity and consistency of information in both acute and post-acute settings;

guidance through post-discharge recovery; and information sharing between the hospital and

patients' family physicians.

6.6 Limitations

This study has several limitations. First, the frequency of 'not applicable' responses to several

items introduced challenges in data analysis. Inclusion of this response in analysis yielded issues

with the interpretation of results. Although 'not applicable' is not missing data, it had to be

treated as such for analyses requiring complete cases. The main implications were for the factor

analysis and regressions. There is no agreed upon sample size necessary for factor analysis.

Suggestions for ratios of participants to items range from 3:1 to 10:1 and recommendations for

total sample sizes have ranged from 50 to 500 (47, 58). However, some studies have replicated

16 factor solutions with as few as 48 participants (original factor solution found with n=491)

!75!

(59). Examination of the magnitude of factor loadings (47), interpretability of findings, and

corroboration of other statistical methods provides support for the factor analysis results of this

study, despite lower sample sizes. The majority of items (62%) for the final five factors had

moderate (>0.5) to strong factor loadings (>0.7), the results were interpretable and the

Cronbach's alpha's for internal consistency and item-domain correlations ranged from adequate

to excellent. For the regressions, models attempting to incorporate all survey items (i.e. 23

predictor items for acute care survey) could not be built due to the low number of complete

cases. Adjustments for item scores were obtained using domain summary scores. The limitation

of this approach is that it provides a crude representation of individual item scores. However, this

was not the only assessment of construct validity and decisions to tag items for removal was not

based solely on this analysis. A second limitation was the respondent bias observed for the post-

acute survey. Assault victims and younger participants were less likely to complete the follow-up

telephone interview. Other studies have shown that age and mechanism of injury impact research

follow-up completion and attendance at clinical appointments (55, 60). Although this may affect

the generalizability of the post-acute survey, it should not affect the internal validity of the study.

A third limitation was that surrogates of patients who died as a result of their injuries were not

surveyed. Previous studies have shown that specialized sampling procedures may be necessary

for this population (1) and that components of care relevant to bereaved family members'

perceptions of hospital quality may differ from relatives of injury patients that live. Again, this

may impact the generalizability of the results but should not affect the study's internal validity.

Future studies could examine validation of a modified version of the QTAC-PREM in this

population. A fourth limitation is the possibility that common-method variance inflated the

associations between items/domains and the global rating. Common-method variance arises

!76!

when the method used to collect a predictor and outcome measure are the same. In this study,

both the items/domains (used as predictors) and the global rating (used as an outcome) were

collected on the same survey therefore, a proportion of the correlation may be due to the

common method of data collection. However, the methods used in this study are only one step in

the ongoing process of validation. Future studies could test predictive criterion validity utilizing

an outcome collected using different methods. For example, item/domain scores could be used to

predict subsequent healthcare utilization (30 day readmission, number/frequency of primary care

visits post-discharge) or health-related quality of life. A fifth limitation is the possibility that

patient ratings were influenced by social desirability bias, a common threat to measure validity

(61, 62). The completion of the measure in-hospital may have lead to increased social

desirability bias compared to mail-out survey measures. However, this issue had to be balanced

against the problem of recall and respondent bias, as well as feasibility. I selected in-hospital

administration to reduce recall bias and to improve response rates; studies show response rates

are often lower for mail-out surveys than on-site administration (62). The issue of social

desirability could be explored in future studies through comparison of results from in-hospital

and mail-out surveys. A fifth limitation is that the generalizability of the validity and reliability

of the tool to different types of health systems is unknown. However, this was a multi-centre

study of three Canadian trauma centres (two level 1 centres and one level 3 centre) and the

psychometric properties and operating characteristics of the survey likely generalize to similar

injury populations in similar health systems. Validation is an ongoing process and future studies

could aim to validate the survey in other population samples to increase the generalizability of

results.

!77!

6.7 Conclusions

The Quality of Trauma Care Patient-Reported Experience Measure (QTAC-PREM) is the first

measure developed to assess patient experiences with overall injury care. This study provides

evidence of the validity and reliability of the QTAC-PREM and suggests it is feasible to

implement in multiple trauma centres. This study also showed that the QTAC-PREM can be

used to identify variations in patient perceived quality of injury care. There are opportunities to

eliminate a small number of poorly performing items and create a more parsimonious tool. After

a small number of revisions, I hope this tool can be used for research and quality improvement in

injury care.

!78!

Chapter 7: Qualitative Analysis of Responses to Open-Ended Items on the Quality of

Trauma Care Patient-Reported Experience Measure (Sub-Study 3)

7.1 Background

Understanding the patient experience is necessary to deliver patient-centered care. Surveys with

close-ended items are a common method used to assess the patient experience (26). However,

qualitative data can be used to complement quantitative measures and may be useful for quality

improvement in healthcare (63). In free-text responses patients/family can describe important

elements of their experience without the constraints of pre-defined topics and response options.

While quantitative data may serve to flag instances of sub-optimal care, the detail and context

provided by qualitative data can yield additional insights to more thoroughly understand the

patient experience, to target patient defined gaps in care, and to shed light on possible

approaches to improve care for patients.

As described in Chapter 6 (sub-study 2), I conducted a study to measure patient experiences with

injury care using "The Quality of Trauma Care Patient-Reported Experience Measure (QTAC-

PREM)". The QTAC-PREM consists of two separately administered surveys (acute care, post-

acute care) with close-ended and open-ended questions. This sub-study focuses on the qualitative

results obtained from the open-ended questions. The objective of this study was to assess the

feasibility of obtaining data from open-ended questions on the QTAC-PREM and to gauge

the potential value of qualitative results in terms of their ability to supplement the

quantitative component and potentially contribute to guiding quality improvement efforts

in injury care.

!79!

7.2 Methods

This qualitative study was embedded in a prospective cohort study to measure patient

experiences with injury care in three trauma centres in Alberta (Foothills Medical Centre,

University of Alberta Hospital, Chinook Regional Hospital) using the QTAC-PREM.

For complete details of patient/surrogate enrollment refer to the Chapter 6.3 "Methods/Design".

7.2.1 Open-Ended Items and Coding Strategy

Both components (acute and post-acute) of the QTAC-PREM contained open-ended items to

elicit free-text responses from participants. The acute survey included four open ended items:

(1) 'What was the best aspect of the care you received?'; (2) 'What was the worst aspect of the

care you received?'; (3) 'Describe any care you received that was unsafe'; (4) 'Provide any

comments on how we can improve injury care for patients'. The post-acute survey included three

open ended items: (1) 'What was the best aspect of the follow-up care you received after being

discharged from the hospital?'; (2) 'What was the worst aspect of the follow-up care you received

after being discharged from the hospital?'; (3) 'What can we do to improve care for patients after

they are discharged from the hospital?'. Participant responses were analyzed using the methods

of thematic analysis. This method consists of assigning codes to summarize and describe free

text responses and subsequently grouping codes into overarching themes which accurately

reflected all main issues described in the original responses (64).

Participants' responses were imported verbatim into an excel spreadsheet and coded. A coding

framework was created to ensure inter-coder reliability and coding consistency. The framework

was serially revised to ensure that codes were capturing unique issues and that the themes

!80!

identified through the coding process were mutually exclusive and accurately described the data.

The constant comparative method was used to ensure reliability (65). The initial coding

framework was inductively developed by two reviewers (Niklas Bobrovitz, Dr. Mauricio Ferri)

using a sample of the data (n=75 acute care surveys, n=25 post-acute care surveys). The

reviewers independently coded the sample data and compared their list of codes and the coded

survey responses. The code lists were amalgamated and coding discrepancies were resolved

through discussion of precise definitions for each code and theme. Two reviewers (Niklas

Bobrovitz, Jamie Boyd) then re-tested the coding framework on a new sample of data (n=100

acute surveys, n=100 post-acute surveys), came to a consensus on codes for each response and

theme definition, and made final revisions to the framework. One reviewer (Niklas Bobrovitz)

then coded the remaining surveys. Codes were grouped into categories, which were then

grouped into broad themes. The categories act as subthemes as they represented the main issues

within each broad theme. They provide substance and granularity for each theme. For example,

"provider to provider communication" acts as a subtheme of "communication and information".

Participant responses that best characterize each theme/subtheme are presented in the results.

All codes included the distinction of "+positive" or "-negative". This ensured that all comments

were interpreted in the correct context. The frequency of each theme/subtheme was analyzed as

an indicator of their relative importance to patient injury care experiences. All responses were

coded but themes were de-duplicated for each respondent so that participants that repeated a

theme were only counted once. If a participant wrote a "+positive" and "-negative" comment

about the same theme both were counted. This approach avoided inflation of theme frequency

!81!

due to single participants writing multiple comments about the same theme, which would have

biased the assessment of a theme's relative importance.

7.2.2 Classifying Unsafe Care

Responses to the acute care question about unsafe care were coded separately, using a modified

version of a checklist for classifying patient adverse events. The checklist was developed by

Dr. Tom Stelfox and was originally based on criteria used in the Harvard Medical Practice Study

(66). The checklist was originally developed to determine the occurrence and classification of an

adverse event. I modified the framework to classify patient/family perceived unsafe acts of care.

The classification included the type of issue identified (e.g. drug related, operative) and the

outcome of the described safety incident.

Three modifications to the framework were made. First, the terms like "errors" and "injuries"

were replaced with the term "issues" to more accurately reflect the type of descriptions proffered

by participants. For example, "medical procedure-related injury" was modified to "medical

procedure-related issue" because a medical injury may not have occurred or could not be verified

based on the participant's description. Second, subcategories were added to the "supportive care

issues" category based on participant responses to more accurately classify the safety incidents

described. Third, the list of outcomes was expanded to include participant defined outcomes of

the perceived unsafe incident. The following outcomes were added: pain or discomfort, concern

or distress, and additional procedures. Participant described outcomes were captured to provide

insight into what patients/surrogates perceive to be unsafe. Appendix J contains the modified

framework for classifying patient/family perceived unsafe care.

!82!

Participant demographic and clinical information was collected using the survey, as well as from

the trauma registry, to describe the sample of participants.

7.3 Results

In total, 512 participants were approached, of which 400 consented (78%) and completed the

acute care survey. Of the 400 enrolled participants, 350 agreed to the follow-up survey and 190

completed the telephone interview (54%). Respondents were primarily male (70%) with a

median age of 45 years, and injured in motor-vehicle collisions (43%) (Table 10, Chapter 6.4).

See Chapter 6.4, Figure 1 for full details of participant enrollment and study flow.

7.3.1 Unsafe Care

Patient/Family Perceived Unsafe Care

Table 23 shows the classification of responses to the acute care safety question. Fifty-seven

participants (14%) described 61 unsafe acts of care, most commonly supportive care issues

(47%) including handling and moving of the patient, leaving the patient unattended

(e.g. bathroom, in bed) without access to the call button, and being given food the patient had

allergies to. Drug-related issues (25%) were second most common with incorrect medications

and poor reactions to medications most frequently described. The third most frequent unsafe care

described were medical procedure related issues (14%) with participants primarily identifying

instances of multiple/prolonged chest tube and intravenous catheter insertions that they perceived

to be a result of inadequate provider skill as well as poor explanations before procedures (x-

rays).

!83!

Table 24 shows outcomes of unsafe care described by participants. The majority of unsafe care

comments (70%) did not include an explicit description of outcome. Thirty percent of unsafe

care descriptions did include at least one explicit outcome. The most commonly described

outcome was pain or discomfort (23%), followed by concern or distress (7%), disability (5%),

and additional procedures (3%).

!

Table 23. Description of the 61 unsafe acts of care perceived by participants

Unsafe C

are Percent of Patients n=57

a

Exemplar Q

uotes

Supportive Care Issues:

nutrition problems, fluid-electrolyte-oxygen

saturation managem

ent, skin problems, excretory

problems, falls, call button not left in reach, contact

aggravating injured body region, cleanliness of room

.

47%

• Left in w

ashroom in a position from

which I could not reach call button.

• Received a m

eal with food I am

allergic to. • Turning m

e over with m

y neck brace. C2#. I felt I didn’t have any head

support when turned to m

y side. • IV

left on for too long causing excess fluid retention. • M

oving me w

hen I was in (too m

uch) pain.

Drug R

elated Issues: error in the m

ethod of use or dose, failure to recognize antagonistic or com

plementary drug-drug

interactions, inadequate monitoring of drug levels or

other inadequate follow-up, drug used

inappropriately, avoidable delay in treatment.

25%

• I got given the wrong pills tw

ice. They were pills that I got (w

eaned) off of and w

asn't taking anymore. I noticed before taking them

. • W

as given tylenol for pain and should not be taking tylenol due to liver problem

s.

Medical Procedure R

elated Issue: procedure inefficacious (failed to relieve sym

ptoms),

patient inadequately prepared before the procedure, avoidable delay in treatm

ent, inadequate monitoring

of patient after the procedure, provider practicing outside their area of expertise, inappropriate or outm

oded form of therapy used.

14%

• Needed second chest tube, the first w

as put in wrong.

• Resident m

issed a suture when he w

as about ready to remove m

y chest tube. • The x-ray tech w

as not very careful and did not explain procedures. • Poor IV

skills. • W

hen my chest drain w

as removed nurse seem

ed unsure of procedure; had no back-up and had 2 aborted attem

pts.

Diagnostic Issue: inappropriate or outm

oded diagnostic tests w

ere used, avoidable delay in treatm

ent.

5%

• Better (referral) if the doctor is unsure. W

ait and see was not the answ

er in m

y case- injury became m

uch worse than it needed to- internal bleeding.

Operative Issue: patient inadequately prepared

before operation, avoidable delay in treatment.

5%

• I didn't know I w

asn't supposed to move m

y spine and drink in the em

ergency/urgent care

Therapeutic Issue: delay in treatm

ent, unprepared for discharge.

3%

• Waiting so long for treatm

ent.

aSome participants described m

ultiple unsafe acts of care.

!

Table 24. Description of outcomes of the 61 unsafe acts of care perceived by participantsa

Outcomes of Unsafe Care

% of Unsafe Acts n=61b

Exemplar Quotes

Unclear 70% • Left in washroom in a position from which I could not reach call button.

Pain or discomfort 23% • Had to be on spine board for 24 hours- difficulty breathing and extreme discomfort. Necessary but very disagreeable.

Concern or distress 7% • The most traumatic off day was in Burn ICU after operation. Was left without call bell, suction and no pain button for quite sometime. I had to become distressed in order to get help.

Disability 5% • Better (referral) if the doctor is unsure. Wait and see was not the answer in my case- injury became much worse than it needed to- internal bleeding.

Additional procedures

3% • Needed second chest tube, the first was put in wrong.

aOnly those reported in the safety section, thereby classifying it as a patient defined unsafe act. bPercentages do not add up to 100 as multiple outcomes reported for 8 unsafe acts of care unsafe acts.

7.3.2 Open-Ended Responses

The majority of participants provided responses to the open-ended items about the best/worst

aspects of care and aspects of care to improve. On the de-duplication, there were 812 acute care

responses with nine themes and 22 subthemes, and 378 post-acute care responses with nine

themes and 16 subthemes. All comments were categorized into a subtheme and almost all

themes/subthemes included both positive and negative comments. Acute care and post-acute care

themes identified by more than 25% of participants are listed in Table 25 and Table 26,

respectively, with descriptions and exemplar quotes for the most common subthemes.

!86!

7.3.3 Acute Care Results

The three most frequently identified acute care themes were: (1) acute care providers; (2)

clinical care; and (3) communication and information (Table 25). (1) Acute care providers was

the most frequent theme overall and received the most positive comments. The majority of

positive comments were about either the providers' interpersonal characteristics and

professionalism, including their friendliness, approachability, and respect for the patient, or the

general quality of staff. For example, "nurses were amazing". (2) Clinical care was the second

most frequent theme and received the most negative comments. Most negative comments were

about physical comfort and included responses about pain management, patient

comfort/discomfort when being moved/handled by providers, and the frequency of care for

patient hygiene. (3) Communication and information was the third most common theme and

received primarily negative responses. The majority of comments were about information about

injuries, tests, and treatments which included participants' responses about having their questions

answered and receiving clear and frequent information on patient prognosis, test results, and

treatments.

!

Table 25. Them

es comm

ented on by more than 25%

of acute care participants and major subthem

es

Acute C

are Them

es A

cute Care Subthem

es Participants

Writing

Positive C

omm

ents (n=331)

Participants W

riting N

egative C

omm

ents (n=331)

Description

Exemplar V

erbatim Q

uotes: [P]= Positive

[N]= N

egative

Acute C

are Providers

75%

30%

Interpersonal characteristics &

professionalism

38%

11%

Characteristics exhibited

by healthcare staff when

interacting with patients or

family including

personability, disposition, professionalism

, friendliness, and approachability.

• [P] Kind staff, respectful and caring. C

ould tell they actually w

anted to help. • [P]A

ll staff mem

bers were very genuine and kind.

• [N] The residents w

eren't personable, they could work on

being more sensitive and bed-side m

anner.

Availability of

healthcare providers 12%

13%

A

bility to locate, identify, and access healthcare providers w

ithin a hospital unit as w

ell as provider responsiveness, visitation frequency, and provider to patient ratios.

• [P] The nurses are always checking if w

e are alright- if we

needed anything. They were there w

hen I needed them.

• [N]... there are so m

any caregivers/doctors, nurses, physio - som

etimes confusing to w

ho was in charge and w

ho has final authority.

• [N] M

ore staff, everyone too busy to help right away.

General com

ment

about the quality of staff

20%

2%

General com

ment about

the quality of nurses, physicians psychological care staff, social w

orkers, rehabilitation staff, param

edics or emergency

responders, or diagnostic im

aging staff.

• [P] The nurses were am

azing and took very good care of me.

• [P] This is a great trauma centre, w

e had great doctors. • [P] Social w

orkers were am

azing. • [P] Physio, O

T were excellent.

• [P] The taber ambulance attendants...w

ere excellent!

!

!88!

Table 25 continued. Themes com

mented on by m

ore than 25% of acute care participants and m

ajor subthemes

Acute C

are Them

es A

cute Care Subthem

es Participants

Writing

Positive C

omm

ents (n=331)

Participants W

riting N

egative C

omm

ents (n=331)

Description

Exemplar V

erbatim Q

uotes: [P]= Positive

[N]= N

egative

Clinical C

are 23%

37%

Physical Com

fort In-H

ospital 12%

16%

M

anaging patient pain, reducing discom

fort (i.e. when handling

injured body regions, during procedures, during diagnostic im

aging), and maintaining patient

hygiene.

• [P] The staff was alw

ays concerned about my com

fort and pain level no m

atter how busy they w

ere. • [P] Personal hygiene and daily assistance w

hen necessary. • [N

] I had a horrible experience, I've been in serious pain everyday and hardly nobody cared.

• [N] N

ot getting any personal hygiene care during the first 5 days of the hospital.

• [N] B

eing transported/handled roughly at times.

Material resources and

organizational m

anagement

3%

11%

Availability and quality of

material resources (i.e. supplies,

beds, special equipment) and

organizational managem

ent at the system

/hospital level, including w

ait times for surgery, em

ergency departm

ent admission, and

diagnostic imaging.

• [P] Facilities & supplies am

azing & easily available right

away.

• [P] Imm

ediate admission to em

ergency. • [N

] Bigger beds for people over 6ft.

• [N] W

aited from fri to m

on night to get emergency surgery

on my foot.

• [N] W

aiting for 15 hours in emergency.

Transitions within and

between settings

2%

7%

Issues of transition within and

between care settings (IC

U,

hospital unit, rehabilitation, home,

hospitals) including: preparedness, adequate transport arranged, m

inimally disruptive, patients

well-inform

ed, new

locations/units explained.

• [P] Concerns w

ith early discharge, patient elderly, living alone, poor w

eather conditions. • [N

] Transfer from fort m

cmurray to edm

onton, then edm

onoton not knowing w

hat to do with m

e and wait

• [N] N

ot being told when I w

as gonna be discharged and be inform

ed of it only some hours in advance still not

knowing anything about rehabilitation tim

e and recovery and w

hat I needed at home w

ithout any phsyio exercies given.

!!!

!89!

Table 25 continued. Themes com

mented on by m

ore than 25% of acute care participants and m

ajor subthemes

Acute C

are Them

es A

cute Care Subthem

es Participants

Writing

Positive C

omm

ents (n=331)

Participants W

riting N

egative C

omm

ents (n=331)

Description

Exemplar V

erbatim Q

uotes: [P]= Positive

[N]= N

egative

Com

munication and

Information

9%

21%

Information about

injuries, tests, and treatm

ents

9%

16%

Frequency, detail, and timeliness

of comm

unication between

providers and patients about patient prognosis, test results, and treatm

ents, including answ

ering patient questions.

• [P] Nurses w

ere exceptional in explaining meds,

pain managem

ent strategy. • [P] I w

as always consulted and encouraged to listen

to doctors rounds and they asked my opinion on m

y husbands care and procedures.

• [N]B

etter comm

unication with the patient- felt like

some details about his situation w

ere withheld

• [N]C

omm

unicate daily about what is happening-

who is ordering tests, w

hat is happening next.!

Provider to provider 0.3%

5%

The am

ount and timeliness of

information sharing and

comm

unication between

different healthcare providers (surgeons, nurses, physiotherapists, radiologists) and support staff (lab em

ployees) about patient treatm

ents, results of patient testing and im

aging, and patient preferences.

• [S] Everyone was on the sam

e page. • [W

] Have doctors check in w

ith nurses more often

so nurses have proper answers and care orders for

patients.! • [W

] Miscom

munication btw

nursing station and kitchen. I w

as on liquid diet longer than I was

supposed to.

!

7.3.4 Post-Acute Care Results

The three most frequently identified post-acute care themes were: (1) communication and

information; (2) appointments and services; and (3) follow-up care providers (Table 26).

(1) Communication and information was the most common theme overall. It received the highest

number of both positive and negative comments. The most frequent subtheme was the ease of

contacting follow-up providers which included comments about participants' ability to contact

providers for advice, to answer questions, or to inquire about future appointments. Positive

comments praised open lines of communication with providers to easily obtain information,

while negative comments highlighted the difficulty of getting in contact with physicians for

advice and recovery guidance. (2) Appointments and services was the second most common

theme with nearly equal amounts of positive and negative comments. The majority of comments

were about the availability, timing, and scheduling of services. Many praised the ease of getting

appointments and the frequency of follow-up while others suggested the interval between

appointments and between discharge and the first follow-up appointment or homecare visit was

too long. (3) Follow-up care providers was the third most common theme. The majority of

comments were positive and focused on healthcare providers' interpersonal characteristics and

professionalism or were general comments about the quality of follow-up care providers such as

surgeons, family physicians, rehabilitation therapists, and homecare nurses.

!

Table 26. Themes com

mented on by m

ore than 25% of post-acute care participants and m

ajor subthemes

Post-Acute C

are T

hemes

Post-Acute C

are Subthem

es

Participants W

riting Positive

Responses (n=180)

Participants W

riting N

egative R

esponses (n=180)

Description

Exemplar V

erbatim Q

uotes: [P]= Positive

[N]= N

egative

Com

munication and

Information

33%

31%

Ease of contacting follow

-up providers 22%

14%

A

bility to contact providers for advice, to answ

er questions, or to inquire about future appointm

ents.

• [P] Open lines of com

munication w

ith trauma surgeon. I

have her email and I have easy availability, can ask em

ail questions.

• [P] Any inform

ation I wanted I could find out easily.

• [N] The w

aiting, I was phoning all the tim

e and not getting any answ

er. • [N

] Be nice if there w

as a non-doctor patient advocate to explain things- som

eone more available than the doctors w

ho knew

your case and you could call to get some guidance.

Information about

injuries, prognosis, and the recovery

process

8%

10%

Quantity and clarity of inform

ation about injuries, prognosis, and next steps in recovery including restrictions on activities, activities to prom

ote healing, recovery tim

elines, and treatment availability

and options. Providers forthcoming

in offering this information and

willingness to answ

er all patient/fam

ily questions.

• [P] My head doctor has been explaining to m

e why m

y m

emory hasn't been great and she explained it exactly how

I understand it. She put it in laym

en's terms.

• [P] Family doctors said I w

ould need xrays and ultrasounds, letting m

e know w

hat I have to do • [N

] No one has contacted m

e at all, not my traum

a doc, no one to let m

e know w

hat to do, not sure if I can do physio, or anything. H

orrible feeling to feel left out in the wind.

• [N] I have an ongoing need for physio and exercise but I

don't know w

hat I should be doing. I need some direction

about to to do.

Provider to provider 3%

7%

The am

ount and timeliness of

information sharing and

comm

unication between healthcare

providers (discharging hospital, physicians, rehabilitation therapists) about patient needs, treatm

ents, and other recovery related issues.

• [P] Physio, family [doctor] and surgeon w

ere all close knit and very good com

munication betw

een them.

• [N] C

omm

unication among the hospital and com

munity

healthcare providers. • [N

]My fam

ily doctor should have had all my records and

looked over them before I got there.

!

!92!

!Table 26 continued. Them

es comm

ented on by more than 25%

of post-acute care participants and major subthem

es Post-A

cute Care

Them

es Subthem

es

Participants W

riting Positive

Com

ments

(n=180)

Participants W

riting N

egative C

omm

ents (n=180)

Description

Exemplar V

erbatim Q

uotes: [P]= Positive

[N]= N

egative

Appointm

ents and Services

31%

29%

Availability, tim

ing, and scheduling of

services

18%

12%

Frequency of follow-up appointm

ents and services, tim

eliness of appointments, and

flexibility of appointment scheduling.

• [P] I could easily get in to see my nurse practitioner

when I w

anted. • [P] I've also enjoyed being able to see the surgeon

monthly, w

ho explains my x-rays and progress and

confirmation that I'm

doing good. • [N

] Biggest thing is follow

up in better time. Instead

of 4 to 6 weeks - once a w

eek might be best.

• [N] W

aiting for the homecare nurses. Took a m

onth to get them

the paperwork and get an appointm

ent. I needed the hom

ecare help when I first got hom

e. A

mount and

thoroughness of follow

-up care

10%

11%

Quantity of follow

-up care appointments and

services in addition to quantity of time spent

with providers in follow

-up appointments.

• [P] My leg doctor: you w

ait for a while, but once

you get in he will spend as m

uch time as you w

ant w

ith him. Y

ou can ask all your questions. • [N

] I wait for 3 hours for m

y appointment - it w

as delayed and then just 5 m

ins she said 'ok you're fine'.

Post-Acute C

are Providers

27%

6%

General com

ment

about the quality of follow

-up care providers

13%

1%

General com

ment about the quality of follow

-up care providers including traum

a doctors, surgeons, specialists, fam

ily physicians, therapists, and hom

ecare nurses.

• [P] Surgeon follow-up w

as good. Supportive. • [P] I guess m

y family doctor has been pretty good.

• [P] The physical therapy has been very helpful. • [P] H

omecare support w

as good. Interpersonal

characteristics and professionalism

11%

1%

Characteristics exhibited by follow

-up providers w

hen interacting with patients or fam

ily including personability, disposition, professionalism

, and friendliness.

• [P] Dr. X

was very friendly and w

illing to listen. • [P] The hom

ecare nurses were very courteous.

• [N] I thought the doctor didn't really care

!

7.4 Discussion

The purpose of this study was to assess the feasibility of obtaining data from open-ended items

on the QTAC-PREM and assess the potential value of the results for supplementing the

quantitative component and contributing to quality improvement in injury care.

The response rates to the open-ended items and large volume of comments suggest it is feasible

to obtain data by including open-ended items on the QTAC-PREM. Eighty-three percent of all

acute care respondents (n=400 total) and 95% of post-acute care respondents (n=190 total)

provided at least one comment to an open-ended question.

A number of themes and subthemes were identified which suggests variation in injury care

experiences. However, three acute care themes (acute care providers, clinical care,

communication and information) and three post-acute care themes (post-acute care providers,

appointments and services, communication and information) were expressed by at least 25% of

participants. All of the most common themes and subthemes included positive and negative

comments, which indicates that participants identified them as the "best" aspects of care if they

were perceived to be high-quality and as the "worst" aspects of care if perceived to be low-

quality. Therefore, these themes may represent key elements that are important to patient

experiences with care. This type of information could be used to direct quality improvement

efforts to areas of care most relevant to patients.

The results of the qualitative component of the QTAC-PREM complement the findings from the

quantitative assessments presented in sub-study 2 (Chapter 6). The most frequent themes (and

!94!

subthemes) identified in this qualitative study mirror the core domains obtained from the factor

analysis: communication and information (including acute and post-acute information about

injuries, treatments, and prognosis) and clinical care in-hospital (including issues of physical

comfort). The qualitative data also highlighted additional key elements in patient experience

including the interpersonal characteristics of providers, availability of providers, ease of

contacting follow-up care providers, and the amount and thoroughness of care. These results

suggest that data from the open-ended items on the QTAC-PREM could serve to corroborate and

supplement the quantitative component.

The themes and subthemes found in this study resonate with the findings of other qualitative

studies of patient perceptions of care in trauma care and critical care (29, 67, 68), although few

studies have been conducted. For example, Gabbe et al. completed interviews with 120 trauma

patients to understand their experiences with care and target areas for improvement. The authors

showed that most patients identified a lack of information about prognosis, insufficient

explanations of treatment options, and conflicting information provided by clinicians. They also

identified problems with patient to provider interaction during ward rounds including the ability

to identify the providers. My study highlighted similar issues with infrequent and limited

information about injuries, patient prognosis, test results, and treatments, as well as provider to

provider communication issues resulting in inconsistent information and care for patients. The

ability to identify providers was also a key issue. Patients indicated that the large number of staff

and frequent turnover made it difficult to remember staff members' names and roles.

!95!

The post-acute themes in this study also echo findings from other studies (11, 67, 69, 70). For

example, the ability to contact providers for advice or to schedule follow-up, information about

physical limitations, the frequency of appointments, wait times in appointment waiting rooms,

and the duration of appointments have been key themes in studies of post-hospital injury care

and outpatient injury rehabilitation (67, 70).

The information obtained from the open-ended QTAC-PREM items about the best/worst aspects

of care, and aspects of care to improve, could be used to develop/reinforce simple strategies to

improve care. The following recommendations address some of the issues identified by patients

in this study. These recommendations can be considered examples of how including open-ended

items on the QTAC-PREM may help guide quality improvement efforts: (1) Ensure provider

name tags are visible and have providers repeatedly introduce themselves and explain their role

to patients; (2) in-unit communication systems like Vocera (71) could be utilized to increase

patient access to nurses as well as improve responsiveness to patient requests; (3) ensure patients

receive detailed written discharge instructions that outline what to expect in the immediate post-

discharge phase; (4) provide information at discharge and follow-up appointments about possible

activities patients can pursue on their own between appointments to aid in recovery;

(5) encourage patients to prepare written questions to bring to follow-up to maximize the use of

appointment time; (6) when possible, notify patients about delays and back-ups in follow-up

appointments.

The information obtained from the open-ended items about unsafe care may also be useful for

quality improvement. In this study, 14% of patients/surrogates reported a safety incident.

!96!

Although a small number of responses described potentially serious issues with care (future

studies could verify adverse events through medical chart review) most descriptions seemed

related to routine care that involved unexpected or prolonged pain or discomfort: "had to be on

spine board for 24 hours- difficulty breathing and extreme discomfort. Necessary but very

disagreeable."; "when my chest drain was removed nurse seemed unsure of procedure; had no

back-up and had 2 aborted attempts"; "chest pump was left in too long, after I expressed

discomfort". These results suggest there may be opportunities to reduce the number of perceived

safety incidents and improve the patient experience by informing patients well about the nature

of ward procedures (e.g. chest tube insertion/removal, dressing changes, moving/handling

patients) and the potential discomfort they may cause. This might help avoid unexpected pain

and distress that may, in some instances, drive patient perceptions of unsafe care.

7.5 Limitations

There are limitations to this study. First, although the response rates and volume and content of

comments support the feasibility of obtaining useful qualitative data with the QTAC-PREM,

there was a significant amount of effort required to analyze the data. Data entry and analysis was

time consuming and the process to develop the coding framework and ensure ongoing inter-

coder reliability was effort-intensive. However, the open-ended questions on the QTAC-PREM

have the potential to provide informative data for quality improvement. Periodic implementation

of the quantitative measure, with the qualitative component, may be worthwhile. Second, there

may be a non-response bias among those providing open-ended data. The items appear at the end

of the survey and participants are not obligated to provide free-text responses. Useable data may

come more frequently from patients more willing to share their experiences and complement or

!97!

criticize care. Also, it is possible that patients whose first language is not English may be less

able or likely to provide open-ended responses. Therefore, the qualitative data obtained may not

represent the experiences of all patients. These issues may limit the generalizability of the

themes/subthemes obtained from using the open-ended items. However, the open-ended items

can operate to supplement the quantitative responses among many of the patients that complete

the survey. Also, the results may provide useful information to improve care for some patients.

Future studies could explore translation of the survey into other languages. Third, although this

was a multi-centre study with a relatively large sample size, the generalizability of these results

to other countries and types of health systems is unclear. Implementation of this tool in other

health systems should be explored.

7.6 Conclusions

This was a multi-centre qualitative study of patient injury care experiences. To my knowledge,

this is the largest prospective qualitative study of injury patients' experiences with care and one

of the few studies to elicit open-ended reports of patient safety incidents in-hospital. Overall, the

study showed it was feasible to obtain data from open-ended items on the QTAC-PREM and the

qualitative results may be useful for identifying specific components of care that could be

improved.

!98!

Chapter 8: Overall Conclusions

Valid and reliable instruments to measure patient experience are needed for research and quality

improvement in injury care. Therefore, the purpose of this thesis was to refine a draft measure of

patient experience with injury care, to quantitatively assess its validity, reliability and the

feasibility of implementing it in multiple trauma centres, and to qualitatively assess the

feasibility and value of including open-ended items on the tool.

Cognitive interviews with 30 injury patients/surrogates guided revision and refinement of the

tool. A multi-site prospective cohort study of 400 patients/surrogates showed that implementing

the tool was feasible and provided evidence of validity and reliability for nearly all of the items

on the survey. In addition, the analysis showed that scores for many of the items could be

combined and reported as composite domain scores for ease of interpretation and reporting.

The qualitative component of the cohort study showed it was feasible to obtain qualitative data

using open-ended items on the survey, to identify common themes in patient experiences from

the qualitative data, and that the qualitative results may be used to supplement the quantitative

findings.

To my knowledge, the prospective cohort study conducted for this thesis is the largest mixed

methods study of patient experiences with injury care. This study provides evidence that the

Quality of Trauma Care Patient-Reported Experience Measure QTAC-PREM is a valid and

reliable tool. This measure could be used to guide quality improvement efforts by identifying

deficits in care from the patient perspective, informing interventions to correct care issues, and to

track subsequent improvements. The tool could be used in periodic local quality assessments, for

!99!

comparisons of injury care quality between trauma centres, and as an outcome measure in studies

of injury care.

The next step towards implementing the QTAC-PREM will be to complete minor revisions

informed by the quantitative assessment and then to disseminate the survey to trauma program

managers and administrators through peer review publication, conference presentations, and

direct contact. The ultimate goal of implementing this measure is to improve the quality of care

delivered to injured patients.

!100!

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45.! Streiner!DL!NG.!Health!Measurement!Scales:!a!practical!guide!to!their!development!and!use.!New!York:!Oxford!University!Press!Inc;!2008.!46.! Guttman!L.!Some!necessary!conditions!for!common!factor!analysis.!Psychometrika.!1954(19).!47.! Floyd!FJ!WK.!Factor!Analysis!in!the!Development!and!Refinement!of!Clinical!Assessment!Instruments.!Psychol!Assessment.!1995;7(3):286R99.!48.! Helmstadter!GC.!Principles!of!Psychological!Measurement!New!York:!AppletonRCenturyRCrofts;!1964.!49.! Nunnally!J!BI.!Psychometric!Theory.!3!ed:!McGrawRHill;!1994.!50.! McGee!J,!Kanouse!DE,!Sofaer!S,!Hargraves!JL,!Hoy!E,!Kleimann!S.!Making!survey!results!easy!to!report!to!consumers:!how!reporting!needs!guided!survey!design!in!CAHPS.!Consumer!Assessment!of!Health!Plans!Study.!Med!Care.!1999!Mar;37(3!Suppl):MS32R40.!51.! McGraw!KO!WS.!Forming!inferences!about!some!intraclass!correlation!coefficients.!Psychological!Methods.!1996;1(1):30R46.!52.! Keller!S,!O'Malley!AJ,!Hays!RD,!Matthew!RA,!Zaslavsky!AM,!Hepner!KA,!et!al.!Methods!used!to!streamline!the!CAHPS!Hospital!Survey.!Health!Serv!Res.![Research!Support,!NonRU.S.!Gov't!Research!Support,!U.S.!Gov't,!P.H.S.].!2005!Dec;40(6!Pt!2):2057R77.!53.! Centers!for!Medicare!&!Medicaid!Services.!Summary!Analyses.!!Baltimore,!MD:!Centers!for!Medicare!&!Medicaid!Services;!2013;!Available!from:!http://www.hcahpsonline.org.!54.! Bjertnaes!OA.!The!association!between!survey!timing!and!patientRreported!experiences!with!hospitals:!results!of!a!national!postal!survey.!BMC!Med!Res!Methodol.!2012;12:13.!55.! Leukhardt!WH,!Golob!JF,!McCoy!AM,!Fadlalla!AM,!Malangoni!MA,!Claridge!JA.!FollowRup!disparities!after!trauma:!a!real!problem!for!outcomes!research.!Am!J!Surg.![Research!Support,!N.I.H.,!Extramural].!2010!Mar;199(3):348R52;!discussion!53.!56.! MacKenzie!EJ,!Rivara!FP,!Jurkovich!GJ,!Nathens!AB,!Frey!KP,!Egleston!BL,!et!al.!A!national!evaluation!of!the!effect!of!traumaRcenter!care!on!mortality.!N!Engl!J!Med.![Comparative!Study!Research!Support,!N.I.H.,!Extramural!Research!Support,!U.S.!Gov't,!P.H.S.].!2006!Jan!26;354(4):366R78.!57.! Ward!JK,!Armitage!G.!Can!patients!report!patient!safety!incidents!in!a!hospital!setting?!A!systematic!review.!BMJ!Qual!Saf.![Research!Support,!NonRU.S.!Gov't!Review].!2012!Aug;21(8):685R99.!58.! Sapnas!KG,!Zeller!RA.!Minimizing!sample!size!when!using!exploratory!factor!analysis!for!measurement.!J!Nurs!Meas.![Evaluation!Studies].!2002!Fall;10(2):135R54.!59.! Cattell!R,!Eber!HW,!Tatsuoka!MM.!Handbook!for!the!Sixteen!Personality!Factor!Questionnaire.!Champaign!IL:!Institute!for!Personality!and!Ability!Testing;!1970.!60.! Langley!J,!Johnson!S,!Slatyer!M,!Skilbeck!CE,!Thomas!M.!Issues!of!loss!to!followRup!in!a!population!study!of!traumatic!brain!injury!(TBI)!followed!to!3!years!postRtrauma.!Brain!Inj.![Research!Support,!NonRU.S.!Gov't].!2010;24(7R8):939R47.!61.! de!Vries!H,!Elliott!MN,!Hepner!KA,!Keller!SD,!Hays!RD.!Equivalence!of!mail!and!telephone!responses!to!the!CAHPS!Hospital!Survey.!Health!Serv!Res.![Research!Support,!U.S.!Gov't,!P.H.S.].!2005!Dec;40(6!Pt!2):2120R39.!

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62.! Gribble!RK,!Haupt!C.!Quantitative!and!qualitative!differences!between!handout!and!mailed!patient!satisfaction!surveys.!Med!Care.![Clinical!Trial!Comparative!Study!Randomized!Controlled!Trial].!2005!Mar;43(3):276R81.!63.! Kryworuchko!J,!Heyland!DK.!Using!family!satisfaction!data!to!improve!the!processes!of!care!in!ICU.!Intensive!Care!Med.![Comment!Editorial].!2009!Dec;35(12):2015R7.!64.! Boyatzis!RE.!Transforming!Qualitative!Information:!Thematic!Analysis!and!Code!Development.!Thousands!Oaks,!California:!Sage;!1998.!65.! Green!J!TN.!Qualitative!Methods!for!Health!Research.!2nd!ed.!London:!Sage;!2009.!66.! Brennan!TA,!Leape!LL,!Laird!NM,!Hebert!L,!Localio!AR,!Lawthers!AG,!et!al.!Incidence!of!adverse!events!and!negligence!in!hospitalized!patients.!Results!of!the!Harvard!Medical!Practice!Study!I.!N!Engl!J!Med.![Research!Support,!NonRU.S.!Gov't].!1991!Feb!7;324(6):370R6.!67.! Gabbe!BJ,!Sleney!JS,!Gosling!CM,!Wilson!K,!Hart!MJ,!Sutherland!AM,!et!al.!Patient!perspectives!of!care!in!a!regionalised!trauma!system:!lessons!from!the!Victorian!State!Trauma!System.!Med!J!Aust.![Research!Support,!NonRU.S.!Gov't].!2013!Feb!18;198(3):149R52.!68.! O'Brien!JA,!FothergillRBourbonnais!F.!The!experience!of!trauma!resuscitation!in!the!emergency!department:!themes!from!seven!patients.!J!Emerg!Nurs.!2004!Jun;30(3):216R24.!69.! MedinaRMirapeix!F,!OliveiraRSousa!S,!SobralRFerreira!M,!Del!BanoRAledo!ME,!EscolarRReina!P,!MontillaRHerrador!J,!et!al.!Continuity!of!rehabilitation!services!in!postRacute!care!from!the!ambulatory!outpatients'!perspective:!a!qualitative!study.!J!Rehabil!Med.![Research!Support,!NonRU.S.!Gov't].!2011!Jan;43(1):58R64.!70.! MedinaRMirapeix!F,!Del!BanoRAledo!ME,!OliveiraRSousa!SL,!EscolarRReina!P,!Collins!SM.!How!the!rehabilitation!environment!influences!patient!perception!of!service!quality:!a!qualitative!study.!Arch!Phys!Med!Rehabil.![Multicenter!Study!Research!Support,!NonRU.S.!Gov't].!2013!Jun;94(6):1112R7.!71.! Breslin!S,!Greskovich!W,!Turisco!F.!Wireless!technology!improves!nursing!workflow!and!communications.!Comput!Inform!Nurs.!2004!SepROct;22(5):275R81.!!

!

Appendix A: Example cognitive interview guide Cognitive)Interview)Guide0)Item)Clarity,)Item)Elimination)and)Layout)Acute)Care)!!Participant:!!Patient!!!!!!Family!Member!)Survey)Given:)Patient!!!!!Family!Member!!!!!!Acute!Care!!!!!!!PostRAcute!Care!!Method:!!!!Retrospective!Probing!!!!!!Introduction:!Dr.!Stelfox!and!I!will!be!conducting!a!study!on!the!quality!of!injury!care!in!three!trauma!centres!in!Alberta,!this!upcoming!summer.!We!will!be!giving!a!survey!to!injured!patients!and!their!family!members.!The!purpose!of!this!survey!is!to!get!patient!and!family!evaluations!of!the!quality!of!injury!care.!!!!I’m!coming!to!you!today!to!get!your!opinion!about!the!survey!and!get!your!help!to!make!the!survey!better!before!we!begin!our!bigger!study!this!summer.!!!!Our!main!purpose!is!to!test!this!survey!to!find!out:!!!

1) which!questions!are!difficult!to!understand!or!answer!2) which!questions!are!least!important!and!could!be!eliminated!!3) if!the!wording!and!format!of!the!survey!are!clear!!

!!We!are!interested!in!your!opinions!about!this!survey!and!any!problems!you!encounter!when!completing!the!survey!questions.!!I!didn’t!write!these!questions!so!don’t!worry!about!criticizing!them.!My!job!is!to!find!out!if!anything!is!wrong!with!them!and!how!to!make!the!survey!better.!!I!will!leave!you!a!copy!of!the!survey!for!you!to!complete.!If!any!questions!are!hard!to!understand,!hard!to!answer!or!don’t!make!sense,!please!circle!the!question!and!we!can!discuss!it!after!you!are!done!the!survey.!When!would!be!a!convenient!time!for!me!to!come!back!to!discuss!the!questions!with!you?!!!!!!!!!!!!!!!

!106!

After!returning:!!!1A.)Were)any)questions)difficult)to)answer)or)understand?)If)so,)which)ones?))• None!were!difficult!to!understand!!

!Why)was)question) ) difficult)to)answer?) )! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! ! !

!How)would)you)re0phrase)question)) in)your)own)words)to)make)it)easier)to)answer?)! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! ! !

!!1B.)Were)there)any)other)questions)that)were)difficult)to)answer)or)understand?)If)so,)which)ones?))! ! ! ! ! ! ! ! ! ! ! ! ! !

)Why)was)question) ) difficult)to)answer?) )! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! ! !

)How)would)you)re0phrase)question)) in)your)own)words)to)make)it)easier)to)answer?)! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! ! !

)1C.)Why)was)question) ) difficult)to)answer?) )! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! ! !

!How)would)you)re0phrase)question)) in)your)own)words)to)make)it)easier)to)answer?))! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! ! !

!107!

!!1D.)Why)was)question) ) difficult)to)answer?) )! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! ! !

!How)would)you)re0phrase)question)) in)your)own)words)to)make)it)easier)to)answer?)! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! ! !

)

2.)How)did)you)arrive)at)your)answer)for)question)8?)(What)did)you)think)about?))

! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! ! !

!

3.)How)did)you)arrive)at)your)answer)for)question)10?)(What)did)you)think)about?))

! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! ! !!

!

4.)What)is)the)concept)you)think)we)are)getting)at)with)question)10?))

! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! ! !

)

5.)If)you)had)to)rephrase)question)10,)how)would)you)ask)that)question?))

! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! ! !

6.)What)do)the)terms)skilled)and)competent)in)question)11)mean)to)you?)!

! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! ! !

!

7.)How)did)you)arrive)at)your)answer)for)question)11?)(What)did)you)think)about?))

! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! ! !

!

!108!

8.)What)did)you)think)about)when)answering)question)17?)(What)did)you)think)about?))

! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! ! !

)

9.)If)you)had)to)make)question)17)more)specific,)how)would)you)phrase)it?))

! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! ! !

!

10.)How)did)you)arrive)at)your)answer)for)questions)18?)(What)did)you)think)about?))

! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! ! !

11.)How)did)you)arrive)at)your)answer)for)question)19?)(What)did)you)think)about?)))

! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! ! !

!

12.)How)did)you)arrive)at)your)answer)for)question)24?))

! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! ! !

)

13.)In)question)28)what)does)“dealing)with)your)concerns)and)frustrations’)mean)to)you?)(to)

get)more)specific)wording)for)the)question)))

! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! ! !

!

14.)How)did)you)arrive)at)your)answer)for)question)35?)(What)did)you)think)about?))

! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! ! !

!

15.)How)did)you)arrive)at)your)answer)for)question)36?)(What)did)you)think)about?)))

! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! ! !

)

)

!109!

16.)Which)questions)do)you)think)are)not)relevant)or)not)important)enough)to)ask)about)on)this)survey?))! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! ! !

! !

!17.)If)you)had)to)make)this)survey)as)short)as)possible,)which)questions)would)you)eliminate?)(not)important)to)ask)about,)not)relevant)for)injury)care,)not)applicable)to)most)people))))• None!

)

18.)What)you)would)change)about)this)survey)to)make)it)easier)to)understand)and)complete?))! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! ! !

!

19.)Additional)Comments))

)

• Add!a!question!

• I!didn’t!know!who!to!ask!questions!to!!

• Who!do!I!find!out!information!from?!!

• It!is!important!to!know!who!to!ask!for!the!right!information!!

• Who!is!the!best!person!to!ask!a!question!!

• *not!information,!different!from!questions!12R15,!information!questions!were!good!

• But!who!do!I!ask!when!I!have!a!questions,!closest!question!was!question!28,!but!that!one!is!not!

specific!enough,!keep!28!in,!but!add!the!question!I!suggested!!

• Question!41!was!good,!I!added!my!comment!there!about!the!question!I!want!put!in!!

!

End!of!interview:!!

!

“That’s!the!end!of!the!interview.!Thank!you!so!much!for!participating.!Dr.!Stelfox!and!I!really!appreciate!your!help.!This!feedback!will!help!us!refine!the!survey!so!it!can!hopefully!be!used!to!improve!care!for!patients!and!their!family!members.”!!

!110!

Appendix B: Modified Aid to Capacity Evaluation form )

Modified)Aid)To)Capacity)Evaluation)(ACE)))Evaluation)of)patients’)ability)to)understand)and)consent)to)study)procedures.)

)Name)of)patient:)________________________________)Date:)_______________)Record)observations)that)support)your)score)in)each)domain,)including)exact)responses)of)the)patient.)Indicate)your)score)for)each)domain)with)a)check)mark.)Etchells E, Darzins P, Silberfeld M, et al. Assessment of patient capacity to consent to treatment. J Gen Intern Med 1999;14:27-34. !

1) Able)to)understand)their)medical)problem.))(Example!Questions:!What!problems!are!you!having!right!now?!Why!are!you!in!the!

hospital?)!!!

! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! ! !

))))))) )Yes!))))))) )Unsure!!!))))))) )No!!!

2) Able)to)understand)the)proposed)study.)(Example!Questions:!What!is!the!purpose!of!our!study?!What!would!you!have!to!do!to!be!involved?)!!

! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! ! !

))))))) )Yes!))))))) )Unsure!!!))))))) )No!!

3) Able)to)understand)the)option)of)refusing)to)participate))(Example!Questions:!Can!you!refuse!participating!in!the!study?!Could!you!stop!participating!in!the!study!at!any!time?)!!

! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! ! !

))))))) )Yes!))))))) )Unsure!!!))))))) )No!

!111!

4) Able)to)appreciate)the)reasonably)foreseeable)consequences)of)participating)in)the)study.)

(Example!Questions:!What!could!happen!to!you!if!you!participate?!How!could!participating!help!you?!How!could!participating!help!other!injury!patients?!Could!participating!cause!problems?)!!

! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! !

! ! ! ! ! ! ! ! ! ! ! ! ! !

))))))) )Yes!))))))) )Unsure!!!))))))) )No!!

!

)Overall)Impression))Definitely)capable))Probably)capable))Probably)incapable))Definitely)incapable)

!INSTRUCTIONS!FOR!SCORING!1.!Domains!1R3!evaluate!whether!the!person!understands!their!current!medical!problem!and!the!proposed!study.!Domains!4!evaluates!whether!the!person!appreciates!the!potential!consequences!of!the!study.!!!2.!For!domains!1R4,!if!the!person!responds!appropriately!to!openRended!questions,!score!YES.!If!they!need!repeated!prompting!by!closedRended!questions,!score!UNSURE.!If!they!cannot!respond!appropriately!despite!repeated!prompting,!score!NO.!!!4.!Record!observations!which!support!your!score!in!each!domain,!including!exact!responses!of!the!patient.!!5.!Remember!that!people!are!presumed!capable.!Therefore,!for!your!overall!impression,!if!you!are!uncertain,!then!err!on!the!side!of!calling!a!person!capable.!!!6.)*If)a)person)scores)NO)on)any)of)the)4)domains)and)overall)impression)is)probably)incapable)or)definitely)incapable)then)DO)NOT)enroll)the)patient.)Instead,)enroll)a)family)member)that)is)present.))

!112!

Appendix C: Acute care surveys

!113!

!114!

!115!

!116!

!117!

!118!

!119!

!120!

!121!

!122!

!123!

Appendix D: Post-acute care surveys

!124!

!125!

!126!

!127!

!128!

!129!

!130!

!131!

!

Appendix E

: Acute care item

response distributions

Appendix E. A

cute care item response distributions

Acute Survey, n=400 participants

Frequency Items

Response O

ption N

ever Som

etimes

Usually

Alw

ays N

/A

Missing

9. Understandable explanations

1.50%

8.25%

32.75%

57.25%

- 0.25%

14. Inform

ation consistent 2.00%

15.00%

46.5%

35.50%

-

1.00%

16. Com

fortable during transfers 1.25%

5.25%

31.75%

56.75%

-

5.00%

18. Pain well controlled

0.75%

12.50%

37.50%

48.25%

0.75%

0.25%

19. Helped w

ith pain 0.75%

6.75%

24.50%

67.25%

0.50%

0. 25%

20. H

elped with difficulty breathing

0.25%

3.75%

9.25%

49.25%

36.75%

0.75%

21. Helped w

ith agitation 3.50%

10.00%

24.75%

34.75%

26.25%

0.75%

22. H

andled carefully 0.75%

5.25%

24.00%

62.50%

7.25%

0. 25%

23. H

elped with hygiene

2.50%

14.25%

27.00%

46.25%

9.25%

0.75%

24. Providers explained their roles 1.25%

9.75%

26.00%

62.50%

-

0.50%

25. Addressed concerns

2.00%

11.75%

23.25%

43.50%

18.25%

1. 25%

27. Dignity considered

2.75%

9.00%

25.50%

60.25%

- 2.50%

28. Perceived unsafe care*

84.25%

11.25%

1.00%

2.00%

- 1.50%

29. R

eligious preferences respected 5.00%

2.75%

4.25%

31.00%

55.50%

1.50%

30. Treated unfairly*

0.75%

2.00%

5.75%

90.25%

0.25%

1.00%

Dichotom

ous Items

No

Y

es

N/A

N

ot Able

to A

nswer

10. Injuries explained 6.75%

88.00%

1.00%

4.25%

11. Explained affect of injuries

23.00%

64.50%

1.50%

11.00%

12. Explained instructions to care for injuries 17.50%

62.25%

2.00%

18.00%

13. Explained recovery tim

eline 16.25%

71.00%

1.00%

11.75%

15. Explained transfers

3.75%

85.00%

2.75%

8.5%

17. Explained unit landmarks

18.75%

66.25%

4.00%

11.00%

26. Offered em

otional support 53.50%

41.75%

4.75%

-

0-10 Global R

ating Item

0-2

3-5

6-8

9-10

Missing

31. Overall care

0.5%

5%

34%

60.25%

0.25%

*N

egatively worded item

.

!

Appendix F: Post-acute care item

response distributions

Appendix F. Post-acute care item

response distributions Post-A

cute Survey, n=190 participants Frequency Item

s

Response O

ption

Never

Som

etimes

U

sually

Alw

ays

N/A

Missing

12. Understandable explanations

3.7%

11.6%

22.1%

57.9%

4.7%

-

13. Addressed concerns

2.6%

12.1%

15.8%

46.3%

23.2%

-

14. Information consistent

2.6%

8.4%

19%

36.3%

33.7%

-

15. Perceived unsafe care* 97.0%

0

0 3.35%

-

-

Dichotom

ous Items

No

Yes

N/A

M

issing N

ot Able to

Answ

er 2. R

eceived written discharge instructions

24.2%

70.5%

2.1%

3.2%

- 3. D

ischarge instructions adequate 6.4%

64%

28%

1.6%

-

4. Enough pain medication to control pain w

ell 16.8%

69.5%

12.6%

0

1%

5. Received support services

11.6%

55.3%

33.2%

- -

Attended an appointm

ent with a...

6a. Traum

a doctor, surgeon, or specialist 24.2%

75.3%

0.5%

-

- 6b. Fam

ily physician or general practitioner 29.5%

69.5%

1%

-

- 6c. Physio, rehab, or occupational therapist

47.9%

50%

2%

- -

Scheduled for an appointment w

ith a...

7a. Trauma doctor, surgeon, or specialist

39%

60%

1%

- -

7b. Family physician or general practitioner

50.5%

47.9%

1.6%

- -

7c. Physio, rehab, or occupational therapist 34.7%

61.6%

2.6%

1%

-

Difficulty getting appointm

ents with a...

8a. Traum

a doctor, surgeon, or specialist 12.6%

71%

16.3%

-

- 8b. Fam

ily physician or general practitioner 4.7%

71.1%

24.2%

-

- 8c. Physio, rehab, or occupational therapist

2.6%

59%

38.4%

- -

9. Explained next steps in recovery 17.9%

77.4%

4.7%

-

- 10. D

escribed recovery timeline

31.6%

63.7%

4.5%

-

11. Received all inform

ation wanted

17.9%

77.9%

4.2%

-

0-10 Rating Item

s 0-2

3-5 6-8

9-10 N

/A

Missing

16. Inform

ation sent to family physician or G

P 15.3%

4.2%

16.3%

29.5%

32.1%

2.6%

17. Guidance through post-discharge recovery

4.7%

14.2%

41.1%

39.5%

- 0.5%

18. Overall care (G

lobal rating item)

4.2%

9%

40.5%

45.3%

0.5%

0.5%

*N

egatively worded item

.

!

Appendix G: Acute care regression outputs

Acute care regression Acute domain ologit acute_global per_comminfo per_dischinfo per_clinical per_support c_a28_cat Ordered logistic regression Number of obs = 367 LR chi2(5) = 229.82 Prob > chi2 = 0.0000 Log likelihood = -212.16677 Pseudo R2 = 0.3513 ------------------------------------------------------------------------------ acute_global | Coef. Std. Err. z P>|z| [95% Conf. Interval] -------------+---------------------------------------------------------------- per_comminfo | 2.175991 .7909663 2.75 0.006 .6257258 3.726257 per_dischi~o | 1.166439 .3542501 3.29 0.001 .4721212 1.860756 per_clinical | 9.649915 1.22609 7.87 0.000 7.246822 12.05301 per_support | .4998057 .2929362 1.71 0.088 -.0743387 1.07395 c_a28_cat | -.5758419 .3623178 -1.59 0.112 -1.285972 .1342878 -------------+---------------------------------------------------------------- /cut1 | 7.193754 .912225 5.405826 8.981682 /cut2 | 10.589 1.05827 8.514834 12.66318 ------------------------------------------------------------------------------ . brant Brant Test of Parallel Regression Assumption Variable | chi2 p>chi2 df -------------+-------------------------- All | 5.33 0.378 5 -------------+-------------------------- per_comminfo | 0.01 0.909 1 per_dischi~o | 0.08 0.784 1 per_clinical | 4.75 0.029 1 per_support | 0.13 0.714 1 c_a28_cat | 0.01 0.907 1 ---------------------------------------- A significant test statistic provides evidence that the parallel regression assumption has been violated.

!135!

Appendix H: Post-acute care regression outputs ologit postacute_global per_dischprepar per_postcomminfo per_postappointment cp_16 cp_15_cat cp_4 Ordered logistic regression Number of obs = 107 LR chi2(6) = 71.03 Prob > chi2 = 0.0000 Log likelihood = -73.625613 Pseudo R2 = 0.3254 ------------------------------------------------------------------------------ postacute_~l | Coef. Std. Err. z P>|z| [95% Conf. Interval] -------------+---------------------------------------------------------------- per_dischp~r | .5645677 .7233264 0.78 0.435 -.853126 1.982261 per_postco~o | 6.776698 1.377521 4.92 0.000 4.076806 9.47659 per_postap~t | 2.331561 1.453246 1.60 0.109 -.5167475 5.179871 cp_16 | .1580025 .059812 2.64 0.008 .0407732 .2752318 cp_15_cat | .3211641 1.326593 0.24 0.809 -2.278911 2.921239 cp_4 | .2232275 .189095 1.18 0.238 -.1473918 .5938468 -------------+---------------------------------------------------------------- /cut1 | 6.651931 1.629064 3.459025 9.844838 /cut2 | 9.98631 1.80879 6.441146 13.53147 ------------------------------------------------------------------------------ . brant Brant Test of Parallel Regression Assumption Variable | chi2 p>chi2 df -------------+-------------------------- All | 1.84 0.934 6 -------------+-------------------------- per_dischp~r | 0.16 0.692 1 per_postco~o | 0.00 0.960 1 per_postap~t | 0.14 0.707 1 cp_16 | 1.40 0.237 1 cp_15_cat | 0.01 0.905 1 cp_4 | 0.06 0.809 1 ---------------------------------------- A significant test statistic provides evidence that the parallel regression assumption has been violated.

!

Appendix I: Item

-level correlation matrix for Q

TA

C-PR

EM

and HC

AH

PS items

A

ppendix I. Spearman correlation coefficients betw

een QTA

C and H

CA

HPS item

s

HC

AH

PS Item

s

Q

TA

C-PR

EM

Items

Com

munication and Inform

ation

Discharge Inform

ation

Safety

T9 T10

T14 T15

T17 T11

T12 T13

T28

Nurse

Com

munication

H1

-0.15 -0.14

0.24 0.00

0.23 0.11

-0.07 0.01

0.38

H2

0.09 0.06

0.30 0.14

0.24 0.19

0.13 -0.07

0.03

H3

-0.04 -0.15

0.08 0.19

0.02 0.07

-0.07 0.02

0.06

Physician C

omm

unication H

5 -0.04

-0.15 0.08

-0.01 -0.10

0.07 0.05

-0.15 0.11

H6

-0.05 -0.15

0.15 0.05

0.05 0.09

0.00 -0.15

0.23

H7

0.16 0.31

0.54 0.12

0.10 0.32

0.53 0.13

0.47

Staff R

esponsiveness H

4 -0.01

-0.10 -0.03

-0.13 -0.16

-0.11 0.04

-0.08 0.17

H11

0.04 -0.01

0.14 0.00

-0.16 0.09

-0.14 -0.21

0.19

Pain M

anagement

H13

-0.13 -0.22

0.04 -0.03

0.11 0.16

0.06 0.00

0.26

H14

-0.01 -0.13

0.29 -0.03

0.07 0.21

0.15 0.23

0.37

Medication

Com

munication

H16

-0.06 0.09

0.24 0.25

0.27 0.13

0.33 0.12

0.11

H17

-0.26 0.05

0.12 0.32

0.32 0.14

0.25 0.33

0.00

Discharge

Information

H19

-0.06 -0.01

0.17 0.15

0.15 0.21

-0.09 0.04

-0.02

H20

0.00 -0.05

0.17 0.00

0.00 0.16

-0.15 0.13

0.07

Cleanliness of H

ospital H

8 -0.21

-0.17 0.07

-0.21 -0.21

-0.18 -0.19

0.08 0.26

Quietness of H

ospital H

9 -0.37

-0.20 0.09

0.07 0.08

0.03 0.01

-0.11 -0.26

Global R

ating H

21 0.02

0.13 0.29

-0.33 -0.33

0.33 0.37

0.27 0.09

Recom

mend

Hospital

H22

0.08 0.13

0.31 0.02

0.02 0.25

0.36 0.12

0.44

!137!

Appendix I. Spearm

an correlation coefficients between Q

TAC

and HC

AH

PS items

H

CA

HPS

Items

Q

TA

C-PR

EM

Items

Clinical and A

ncillary Aspects of C

are

Supportive A

spects of Care

Global

T16 T18

T19 T20

T21 T22

T23 T24

T25 T27

T30

T26 T29

T31

Nurse

Com

munication

H1

0.11 0.45

0.46 0.19

0.29 0.36

0.23 0.33

0.43 0.48

0.46 0.29

0.44 0.49

H2

0.30 0.37

0.43 0.08

0.48 0.47

0.12 0.33

0.59 0.42

0.40 0.03

0.25 0.43

H3

0.15 -0.11

-0.18 0.08

0.08 0.00

0.15 0.52

0.39 0.41

0.27 0.02

0.50 0.24

Physician C

omm

unication

H5

0.32 -0.11

-0.08 0.11

0.03 0.14

0.09 0.06

0.06 0.11

0.01 0.09

0.46 0.01

H6

0.30 0.06

0.10 0.01

0.09 0.25

0.21 0.32

0.24 0.25

0.06 -0.05

0.37 0.21

H7

0.38 0.10

0.14 0.14

0.41 0.44

0.05 0.10

0.28 0.31

0.30 -0.18

0.12 0.37

Staff R

esponsiveness

H4

-0.05 0.24

0.11 -0.24

0.02 0.02

0.14 0.10

0.17 0.32

-0.20 -0.07

-0.18 0.20

H11

0.08 0.33

0.33 0.00

0.09 0.26

0.13 0.30

0.30 0.41

0.15 0.12

0.14 0.23

Pain M

anagement

H13

0.10 0.48

0.24 -0.09

0.21 0.14

0.17 0.46

0.43 0.30

0.34 0.04

0.29 0.47

H14

-0.02 0.36

0.32 0.11

0.27 0.35

0.16 0.44

0.59 0.29

0.08 0.13

0.28 0.48

Medication

Com

munication

H16

0.08 0.08

0.11 0.02

0.01 -0.05

-0.13 0.08

0.11 0.05

0.30 -0.01

-0.10 0.03

H17

0.06 -0.09

0.03 0.16

0.00 -0.20

-0.04 -0.02

0.11 -0.18

0.13 0.08

0.13 0.01

Discharge

Information

H19

0.01 -0.22

0.00 0.16

0.24 0.16

0.35 0.27

-0.01 0.23

0.00 0.19

0.17 -0.02

H20

-0.20 -0.11

0.18 0.08

0.04 0.05

0.34 0.02

0.15 0.03

-0.10 0.16

0.25 -0.05

Cleanliness of H

ospital H

8 -0.02

0.03 0.00

-0.02 -0.17

-0.07 0.31

-0.04 0.21

0.25 -0.01

0.13 0.14

0.21

Quietness of H

ospital H

9 0.02

-0.04 0.09

-0.07 0.05

-0.13 0.11

0.17 0.10

0.04 0.20

0.30 0.04

0.10

Global R

ating H

21 0.11

0.15 0.20

0.08 0.37

0.23 0.28

0.06 0.17

0.26 0.08

0.22 -0.31

0.50

Recom

mend

Hospital

H22

0.25 0.24

0.41 0.18

0.45 0.31

-0.02 0.19

0.40 0.32

0.43 0.21

0.12 0.55

!

Appendix J: Classification framework for unsafe acts of care

Unsafe Care Classification

1. Diagnostic Issue: This category concerns wrong or delayed diagnosis. This is a

common sort of issue. It usually involves failure to employ appropriate tests or

delays in taking action regarding a diagnosis.

a. There was a failure to employ indicate test(s).

b. There was failure to act upon results of tests or findings.

c. Inappropriate or outmoded diagnostic tests were used.

d. There was a delay in diagnosis.

e. Physicians or other professionals were practicing outside their area of expertise.

2. Operative Issue: This category refers to any issue that was a result of an operation or that

occurred in the post-operative period.

a. The operation was inefficacious (failed to relive symptoms).

b. The patient was inadequately prepared before the operation.

c. Delay in treatment.

d. There was inadequate monitoring of the patient after the operation.

e. Physicians or other professionals were practicing outside their area of expertise.

f. Inappropriate or outmoded forms of therapy were used.

g. None of these apply.

!139!

3. Anesthesia-Related Issue: This category refers to any problems with anesthetic agents. While

anesthesia-related issues a

re operative issues, we want to discriminate between the operative complications caused by

surgeons and the anesthesia-related issues that are the results of matters under the control of an

anesthetist.

a. Intubation.

b. Anesthetic agent issue.

c. Equipment failure.

4. Medical Procedure-Related Issue: This category concerns the issues of procedures that do

not occur in the operating room. Examples of such issues are those related to chest tubes and

sutures. While these procedures may be performed by surgeons, they are considered non-

surgical, in that they do not occur in the operating room.

a. The procedure was inefficacious (failed to relive symptoms).

b. The patient was inadequately prepared before the procedure.

c. There was a delay in treatment.

d. There was inadequate monitoring of the patient after the procedure.

e. Physicians or other professionals were practicing outside their area of expertise.

f. Inappropriate or outmoded forms of therapy were used.

g. None of these apply.

!140!

5. Drug-Related Issue: Any adverse or ill-reaction described by the patient. May also include

issues related to missing doses of medication or of mishandling of medication related

information like medications administration records or charts.

a. Issue resulted from the method of use or dose.

b. There was failure to recognize possible antagonistic or complementary drug-drug interactions.

c. There was inadequate monitoring of drug levels or other inadequate follow-up.

d. The drug was used inappropriately.

e. There was an avoidable delay in treatment.

f. Physicians or other professionals were practicing outside of their area of expertise.

g. None of these apply.

6. Therapeutic Issue: This category describes issues involved in therapy that was not captured

in the proceeding categories. This includes issues that were not operative issues, anesthesia-

related issues, the result of medical procedures or drug therapy.

a. Inappropriate therapy

b. Delay in treatment

c. Unprepared for discharge*

7. Supportive Care Issue: The hospital is presumed to have responsibility for providing patients

with basic supportive care and protecting them from harm (even self-induced).

a. adequate nutrition.

b. fluid/electrolyte/02 sats management*.

c. skin care.

!141!

d. management of excretory functions.

e. protection from falls.

f. inaccessibility of the call button*.

g. contact aggravating the injured body region.

h. cleanliness of the room or patient surroundings*.

Outcome of Issue

1. Disability

2. Prolonged hospital stay

3. Both 1 and 2

4. Pain or discomfort

5. Additional procedures

6. Concern or distress

7. Unclear

Multiple outcomes may be coded.