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Patient Reported Outcome Measures (PROMs)
Challenges for people with low literacy skills and/or learning disabilities
Deepa Jahagirdar, Karen Ritchie, Thilo Kroll, Sally Wyke
Social Dimensions of Health Institute WebinarMay 9, 2012
• Background• Current Use
– PROMs in England – PROMs in Scotland
• Knowledge Transfer Partnership (KTP) project – Using PROMs with people with low literacy
and/or learning disabilities
Agenda
Your health PROMs are questionnaires about people’s health.
They are used to gather information directly from patients about their symptoms, condition and overall quality of life.
What are PROMs?
Current Use KTP ProjectBackground Discussion
http://www.healthstatus.sgul.ac.uk/SGRQ_download/Original%20English%20version.pdf
Current Use KTP ProjectBackground Discussion
The process of development can take several months or even years.
Researchers, patients and subject experts should be involved in deciding what to include in the questionnaire
Questionnaires are then put through rigorous statistical testing
Current Use KTP ProjectBackground Discussion
How are PROMs developed?
Feedback results
Gather data from completed PROMs
Improved care
Analysis
Current Use KTP ProjectBackground Discussion
How are PROMs Used?
PROMs data collected before and after surgery for:-hernia-varicose vein-knee replacement-hip replacement
Publicly available reports are produced every month and are available here: http://www.hesonline.nhs.uk/Ease/servlet/ContentServer?siteID=1937&categoryID=1295
Background KTP Project DiscussionCurrent Use
PROMs in England
http://www.hesonline.nhs.uk/Ease/servlet/ContentServer?siteID=1937&categoryID=1583
Background KTP Project DiscussionCurrent Use
PROMs in England
PROMs collection results 2009-2010
2010 Quality Strategy
Person Centred Care
PROMs
Background KTP Project DiscussionCurrent Use
PROMs in Scotland
Effective Care
2. Joint project that aims to develop a user guide on how PROMs can be implemented inclusively so that people with low literacy skills and learning disabilities are not left out of any initiatives.
1. National survey to gauge health professionals’ use of PROMs in Orthopaedic, Mental Health and COPD services in Scotland
Background KTP Project DiscussionCurrent Use
PROMs in Scotland
Result RecommendationA large variety of PROMs and confusion about the definition of a PROM
Guidance on which PROMs to use and clarifying the definition of a PROM may be helpful
Disparity between national and local interest in using PROMs
Consider the dual use of PROMs data for quality improvement and individual patient monitoring
There are challenges using PROMs with people with low literacy or lack of comprehension
Consider the accessibility of PROMs initiatives before they are implemented (Knowledge Transfer Partnership Project)
Results from national survey in COPD, Mental Health and Orthopaedic services (103 respondents in total):
Background KTP Project DiscussionCurrent Use
PROMs in Scotland
Knowledge Transfer Partnership (KTP) Project Using PROMs with people with low literacy
and/or learning disabilitiesUniversity of
Glasgow
Healthcare Improvement Scotland
University of Dundee&
Collaborative project addressing the challenges people with low literacy skills and/or learning disabilities
may face when using PROMs
Background Current Use DiscussionKTP Project
1/5 adults with low literacy skills
1.5 million with learning disabilities
Background Current Use DiscussionKTP Project
The Problem
Feedback results
Gather data from completed PROMs
Improved care Analysis
Ease of UseAccessibility
St George Respiratory Questionnaire (SGRQ)
EuroQol-5D (EQ5D)&
People with low literacy skills or learning disabilities
Health Professionals
People with COPD
Interviews & Focus Groups
Project Details
Background Current Use DiscussionKTP Project
Larger font sizes and consistent alignment would be helpful
Mixed opinions on pictures and colours
A A A
Questions require too much recall or addressing too many things are confusing
Background Current Use DiscussionKTP Project
Results: ACCESSIBILITY
Not much difference between people with low literacy/learning disabilities and other patients
Professional perspective did not emphasize problems associated with confidentiality and distractions in the waiting room
The main difference between professionals and patients was the location to complete the PROM; patients highly advocated home completion
vs.
Background Current Use DiscussionKTP Project
Results: EASE OF USE
Flexibility in the delivery of PROMs: offering patients a choice of where to complete the PROM
PROMs that adhere to accessibility guidelines
Background Current Use DiscussionKTP Project
Results: SUMMARY
Developing a user guide to support the inclusive use of PROMs
Three formats: online, PDF and easy read (under development)
Philosophy: Interactive, easy to disseminate and easy to use
Background Current Use DiscussionKTP Project
Next Steps
Interactive presentation to navigate through
USER GUIDE: PDF version excerpts
USER GUIDE: Online version excerpts
Navigate through the sections-available to anyone through an online link
Background Current Use KTP Project Discussion
Discussion
Which format(s) would be best for health professionals?
What is the best way to implement this information in practice?
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