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Patient-reported outcomes for asthma in children and adults Marion Sills, MD, MPH Barbara Yawn, MD, MPH Monica Federico, MD Bethany Kwan, PhD, MSPH Presentation to the SAFTINet PEC April 1, 2011

Patient-reported outcomes for asthma in children and adults

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Page 1: Patient-reported outcomes for asthma in children and adults

Patient-reported outcomes for asthma in children and adults

Marion Sills, MD, MPHBarbara Yawn, MD, MPH

Monica Federico, MDBethany Kwan, PhD, MSPH

Presentation to the SAFTINet PECApril 1, 2011

Page 2: Patient-reported outcomes for asthma in children and adults

Asthma Monitoring• Office based

pulmonary function test units to be installed by SAFTINet in partner practices*

*Only on April 1

SAFTINet PFT

Page 3: Patient-reported outcomes for asthma in children and adults

Objectives of this discussion• Present 2 asthma PRO tools, including pros

and cons of each• Discuss process for selecting one tool that

will be used by all partners• Discuss questions, considerations, and

processes that each organization will need to address

• Timeline

Page 4: Patient-reported outcomes for asthma in children and adults

Review: SAFTINet partners’ current use of asthma PRO tools• Assessments in narratives only• No use of standardized, validated, uniform

tools

Page 5: Patient-reported outcomes for asthma in children and adults

SAFTINet Partner Requirements for a PRO tool• Simplicity• Does not interfere with workflow• Appropriate for literacy level and language

of patient populations• Alignment with other organizational efforts

and initiatives

Page 6: Patient-reported outcomes for asthma in children and adults

Rationale for use of PROs for children and adults with asthma in SAFTINet• Clinical utility

– Screening tool– Patient monitoring tool– Patient centered care (feedback to patients)– Decision aid– Facilitating multidisciplinary team communications

• Research utility– Standardized evaluation of outcomes

• Why asthma?– Effects of disease on functioning and quality of life not accounted for in

standard EHR data– Severity of disease difficult to assess– Patients experience symptoms (unlike hypertension)

Page 7: Patient-reported outcomes for asthma in children and adults

What the guidelines say• Expert Panel Report 3 (EPR-3):

Guidelines for the Diagnosis and Management of Asthma

• EPR-3: “The key elements of assessment and monitoring are refined to include the separate, but related, concepts of severity, control, and responsiveness to treatment.”

Page 8: Patient-reported outcomes for asthma in children and adults

What the guidelines say• EPR-3 recommends that clinicians

– Identify precipitating factors – Identify comorbidities that may aggravate

asthma – Assess patient’s knowledge/skills for self-

mgt – Classify asthma severity

Page 9: Patient-reported outcomes for asthma in children and adults

What the guidelines say• EPR-3 recommends that clinicians

– Identify precipitating factors – Identify comorbidities that may aggravate

asthma [from chart, history]– Assess patient’s knowledge/skills for self-

mgt – Classify asthma severity

Page 10: Patient-reported outcomes for asthma in children and adults

What the guidelines say• EPR-3 recommends that clinicians

– Identify precipitating factors – Identify comorbidities that may aggravate

asthma [from chart, history]– Assess patient’s knowledge/skills for self-

mgt – Classify asthma severity

Page 11: Patient-reported outcomes for asthma in children and adults

What the guidelines say• EPR-3 recommends that clinicians

– Classify asthma severity

“Assessment is made on the basis of current spirometry and the patient’s recall of symptoms over the previous 2–4 weeks.”

Page 12: Patient-reported outcomes for asthma in children and adults

What the guidelines say• EPR-3 recommends that clinicians

– Classify asthma severity• Nighttime awakenings• Daytime symptoms • Need for SABA* for quick relief of symptoms • Work/school days missed • Ability to engage in normal daily activities or in

desired activities • Quality-of-life assessments

*SABA: short-acting beta-agonist, a “rescue” or “quick relief” medication

Page 13: Patient-reported outcomes for asthma in children and adults

What the guidelines sayEPR-3 recommendation ACT APGAR

Precipitating factors

Patient’s self-mgt knowledge/skills

Nighttime awakenings

Daytime symptoms

Need for rescue SABA

Work/school days missed

Engage in normal daily activities

Quality-of-life

Page 14: Patient-reported outcomes for asthma in children and adults

Proposed tools• Asthma Control Test (ACT, C-ACT)• Asthma APGAR

Page 15: Patient-reported outcomes for asthma in children and adults

ACT• 2 versions: adult (5

questions) and child (7 questions)

• GlaxoSmithKline product

• Score range 5-25; <20 may indicate need for greater asthma control

Page 16: Patient-reported outcomes for asthma in children and adults
Page 17: Patient-reported outcomes for asthma in children and adults

Engage in normal daily activities

Nighttime awakenings

Daytime symptoms

Overall (acute) severity

Page 18: Patient-reported outcomes for asthma in children and adults

Daytime symptoms

Daytime symptoms

Nighttime awakenings

Page 19: Patient-reported outcomes for asthma in children and adults

Engage in normal daily activities

Nighttime awakenings

Daytime symptoms

Overall severity

Need for rescue SABA

Page 20: Patient-reported outcomes for asthma in children and adults

Comparing ACT to EPR-3 recommendationsEPR-3 recommendation ACT APGAR

Precipitating factors N

Patient’s self-mgt knowledge/skills N

Nighttime awakenings Y

Daytime symptoms Y

Need for rescue SABA Y (adult)

Work/school days missed N

Engage in normal daily activities Y

Quality-of-life Y

4 weeks of symptomsAdult and child4-5 options/question5-7 questions<20 = poor control

Page 21: Patient-reported outcomes for asthma in children and adults

ACT pros and consPROs

• Well validated• Widely used• Minimal level for good

control and MCID established

• Translated into many languages

CONs• Long questions• Does not include days

missed from school/work

• No guide to how to use the results

• Not studied in association with clinical outcomes

Page 22: Patient-reported outcomes for asthma in children and adults

ACT pros

Widely validated

Page 23: Patient-reported outcomes for asthma in children and adults

If ACT <20, then what?

Page 24: Patient-reported outcomes for asthma in children and adults

Asthma APGAR• Designed to measure severity to include elements

missing in > 60% of primary care charts: – trigger exposure– adherence to prescribed therapy– patient reported value of their asthma therapy

• Developed by Dr. Yawn in collaboration with practicing primary care physicians—– face validity– practical

Page 25: Patient-reported outcomes for asthma in children and adults

AS

THM

A A

PG

AR

Engage in normal daily activities

Daytime symptoms

Nighttime awakenings

Precipitating factors

Patient’s self-mgt knowledge/skills

Need for rescue SABA

Quality-of-life

Patient’s self-mgt knowledge/skills

Page 26: Patient-reported outcomes for asthma in children and adults

Comparing ACT and APGAR to EPR-3EPR-3 recommendation ACT APGAR

Precipitating factors N Y

Patient’s self-mgt knowledge/skills N Y

Nighttime awakenings Y Y

Daytime symptoms Y Y

Need for rescue SABA Y (adult) Y

Work/school days missed N N

Engage in normal daily activities Y Y

Quality-of-life Y Y

4 weeks of symptomsAdult and child4-5 options/question5-7 questions<20 = poor control

2 weeks of symptomsNo child version3 options/question8 questionsAlgorithm for mgt

Page 27: Patient-reported outcomes for asthma in children and adults

Asthma APGAR• PROs

– Addresses missed and modified activities– Addresses most common causes of poor control– Is linked to an algorithm for next steps– Shown to improve outcomes in clinical practice– Test/retest, face validity and comparable to EPR-3

• CONs– Not compared to ACT for validation– Minimally clinically significant difference unknown

Page 28: Patient-reported outcomes for asthma in children and adults

APGAR algorithm

Page 29: Patient-reported outcomes for asthma in children and adults

Comparing the ACT and the Asthma APGAR• Similarities

– Test for symptoms, activity limitations, and use of rescue medications

• Differences– ACT more widely validated– ACT is shorter– ACT has child version– APGAR has linked treatment algorithm– APGAR addresses asthma triggers, adherence to

prescribed medications, and patient’s perception of asthma relief from therapy

Page 30: Patient-reported outcomes for asthma in children and adults

Questions and considerations• What would the tool be used for in your organization?• What resources are required?  • Which patients will you assess?• How often should patients complete questionnaires?  Should it

be tied to visits or a way to follow patients between visits?• How will the tool be administered and scored?  • What tools are available to aid in interpretation and how will

scores requiring follow-up be determined?• When, where, how, and to whom will results be presented?• How will the value of using PROs be evaluated?• Which key barriers require attention?

Page 31: Patient-reported outcomes for asthma in children and adults

Clinical utility• Likely utility of Asthma PROs:

– Patient monitoring tool– Decision aid

• Less likely utility for asthma PROs– Screening tool– Feedback to patients– Facilitating multidisciplinary team

communications

Page 32: Patient-reported outcomes for asthma in children and adults

Resources• Manpower• Information systems and technical support• Space• Financial investment (SAFTINet funds

available)

Page 33: Patient-reported outcomes for asthma in children and adults

Selecting patients to complete the tool• Ambulatory patients with asthma

– How would they be identified?• How often would they complete the tool?

– Every ambulatory visit?• When does the patient complete the tool?

– Beginning of visit?

Page 34: Patient-reported outcomes for asthma in children and adults

Mode of administration• Person completing the tool

• Self-administration• Interviewer administration

• Medium for presentation of tool and data collection• Pencil and paper survey• EHR template• Portable devices (e.g., iPad)• Web-based• Telephony-based

Page 35: Patient-reported outcomes for asthma in children and adults

Scoring• Who will score the results?

• Patient• Member of the health care team

• What tools are available to assist with scoring?

Page 36: Patient-reported outcomes for asthma in children and adults

Presentation of results• Are results presented to patient/provider?• If yes:

• When are results presented?• At time of visit?

• Where are results presented?• Part of workflow?

• How are results presented?• Numeric or graphical presentation

Page 37: Patient-reported outcomes for asthma in children and adults

Data entry• How will data be entered?• Depends on mode of administration

Page 38: Patient-reported outcomes for asthma in children and adults

Interpreting and responding to scores

• Algorithms (Asthma APGAR)• Meaningful scores (ACT)• Linking to clinical guidelines

Page 39: Patient-reported outcomes for asthma in children and adults

Evaluation• Plans for evaluating use of tool on:

• Process/workflow• Quality of care

Page 40: Patient-reported outcomes for asthma in children and adults

Barriers• Clinicians

– Lack of familiarity with the instruments– Doubt about the ability of pros to modify outcomes– Time and resource constraints– Disagreements over impact on patient-clinician relationship

• Patients – Literacy– Being too sick to complete questionnaires– Concern about impact on relationship with clinician

• Health system – Reimbursement– Fit within the clinical workflow

Page 41: Patient-reported outcomes for asthma in children and adults

Anticipated barriers• Generate list of perceived barriers and

potential solutions

Page 42: Patient-reported outcomes for asthma in children and adults

Process for selecting a tool and an implementation strategy• Provider meetings?• IT conversations?• Decision making?• Trainings?

Page 43: Patient-reported outcomes for asthma in children and adults

Organization Worksheet• Walks through the different issues and

processes discussed today• To be completed by organization, with

assistance from PEC liaison• Weekly phone calls with PEC liaison

Page 44: Patient-reported outcomes for asthma in children and adults

Proposed Timeline - 2011

Explore options for asthma

PROs

Discuss PRO with provider

groups

Select asthma PRO tool

Make implementation plan for asthma

PRO tool

Create infrastructure for PRO tool deployment (e.g., EHR

template, iPad purchase &

configuration)

PRO tool training

Begin using asthma PRO

tool

March

April May June July Sept Oct