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1. Patient Reported Outcome Measures (PROMs)
Challenges for people with low literacy skills and/or learning disabilities
Social Dimensions of Health Institute Webinar
May 9, 2012
Deepa Jahagirdar, Karen Ritchie, Thilo Kroll, Sally Wyke
2. Agenda
• 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
3. Background Current Use KTP Project Discussion
What are PROMs?
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.
4. Background Current Use KTP Project Discussion
http://www.healthstatus.sgul.ac.uk/SGRQ_download/Original%20English%20version.pdf
5. Background Current Use KTP Project Discussion
How are PROMs developed?
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
6. Background Current Use KTP Project Discussion
How are PROMs Used?
Gather data from completed PROMs
Improved
care
Analysis
Feedback results
7. Background Current Use KTP Project Discussion
PROMs in England
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?site
ID=1937&categoryID=1295
8. Background Current Use KTP Project Discussion
PROMs in England
PROMs collection results
2009-2010 http://www.hesonline.nhs.uk/Ease/servlet/ContentServer?siteID=1937&categoryID=1583
9. Background Current Use KTP Project Discussion
PROMs in Scotland
2010 Quality Strategy
PROMs
10. Background Current Use KTP Project Discussion
PROMs in Scotland
1. National survey to gauge health
professionals’ use of PROMs in Orthopaedic,
Mental Health and COPD services in Scotland
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.
11. Background Current Use KTP Project Discussion
PROMs in Scotland
Results from national survey in COPD, Mental Health and Orthopaedic
services (103 respondents in total):
Result Recommendation
A large variety of PROMs and Guidance on which PROMs to use
confusion about the definition of a and clarifying the definition of a
PROM PROM may be helpful
Disparity between national and Consider the dual use of PROMs
local interest in using PROMs data for quality improvement and
individual patient monitoring
There are challenges using PROMs Consider the accessibility of
with people with low literacy or lack PROMs initiatives before they are
of comprehension implemented (Knowledge
Transfer Partnership Project)
12. Background Current Use KTP Project Discussion
Knowledge Transfer Partnership (KTP) Project
Using PROMs with people with low literacy
and/or learning disabilities
University of University of
Glasgow Dundee
&
Healthcare
Improvement Scotland
Collaborative project addressing the challenges people with
low literacy skills and/or learning disabilities
may face when using PROMs
13. Background Current Use KTP Project Discussion
The Problem
1/5 adults with low
literacy skills
Gather data from 1.5 million with
completed PROMs
learning
disabilities
Improved
care Analysis
Feedback
results
14. Background Current Use KTP Project Discussion
Project Details
St George Respiratory
Questionnaire (SGRQ) & EuroQol-5D (EQ5D)
Accessibility Ease of Use
Interviews & Focus Groups
Health Professionals
People with low literacy skills
or learning disabilities
People with COPD
15. Background Current Use KTP Project Discussion
Results: ACCESSIBILITY
AAA
Larger font sizes and consistent
alignment would be helpful
Questions require too much recall
or addressing too many things are
confusing
Mixed opinions on pictures and
colours
16. Background Current Use KTP Project Discussion
Results: EASE OF USE
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
vs.
PROM; patients highly advocated home
completion
17. Background Current Use KTP Project Discussion
Results: SUMMARY
PROMs that adhere to accessibility guidelines
Flexibility in the delivery of PROMs: offering
patients a choice of where to complete the
PROM
18. Background Current Use KTP Project Discussion
Next Steps
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
19. USER GUIDE: PDF version excerpts
Interactive presentation to navigate
through
20. USER GUIDE: Online version excerpts
Navigate through the sections
-available to anyone through an
online link
21. 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?
Hinweis der Redaktion
Good afternoon!We would like to welcome you to this Webinar facilitated by SDHII am Karen Ritchie, Head of K&I at Healthcare Improvement Scotland and I am joined by [DEEPA]We are going to present to you some of the work we have been doing in the areas of PROMs in conjunction with academic colleagues in the universities of Glasgow and Dundee.
This is the plan for our presentation today. We will give you some background on what PROMS are and how and why they are used in the UK and we will also describe a research project that is being undertaken through the KTP research programme.
A PROM is a measure of health status. The take the form of questionnaires about people’s health through questions on symptoms, and quality of life. There are many hundreds of different PROMS many of which can be accessed via database collections. There are condition-specific PROMs, for instance the St George Respiratory Questionnaire for respiratory conditions. There are also PROMs that can be used for any conditions, for instance the EQ-5D for health-related quality of life. Please note, there are likely to be copyright or licensing issues relating to the copying, use, and modification of PROMS. Library services should be able to assist with queries in this area.
This is an excerpt from the St George Respiratory questionnaire; a conditions specific tool. Usually PROMs are paper based instruments that patients are asked to complete in their own time at home or at hospital visits. Some are now being developed for use in electronic format. Once the patient has completed the questionnaire the data is then entered and analysed by the healthcare provider for subsequent use.
Ideally PROMs are co-developed between researchers, patients and subject experts to make sure they cover what really matters to patients and what professionals consider good outcomes. They come up with a list of possible items for the PROM often by undertaking some qualitative research eg through focus groups or interviews to determine what is of importance to patients with a particular condition.These items are then put through statistical testing that reduces the number of items that are finally included to a minimum. This testing ensures that the PROM makes sense to patients and ensures that the PROM will give us valid ie that they measure what they are supposed to measure, and useful informationie that the information provided is generalisable.
PROMs are used to measure the outcome of a health service intervention from people’s own perspectives. As PROMS are a measure of health status at a point in time this will require administration of the prom before and after the intervention.The information collected directly from patients can be collated, analysed and fed back to inform others about how well a service intervention has worked. This can lead to changes in the way services are delivered if necessary. Health professionals can also use PROMs to monitor individual patient outcomes.In this way clinicians and the patent can observe changes in health status over time or after changes in treatment. This information can be used to make appropriate adjustments to treatment and care.
In England, a programme for using PROMS to compare the quality of services across the country has been established.PROMs data for groin hernia, varicose vein surgery and hip and knee replacement is compiled, analysed and fed back to services for them to develop quality improvement initiatives. This programme is coordinated by the Department of Health but involves several organizations involved in collecting and analysing the data. PROMs are administered before and after surgery to compare the scores. The results are publicly available and the programme produces a key facts report monthly.
This shows the results in the 2009-2010 final report, the dark green is the improvement as measure by the comparing the pre and post operative scores using PROMs.VAS – visual analogue scale
PROMs are highlighted in the 2010 Quality Strategy under the Person Centred Care quality ambition. The priority is to embed patient reported outcomes across all NHS Scotland services, part of which involves using PROMs to collect appropriate data. Patient reported outcomes can provide information on the effectiveness of care from the patients persepective. This should not be confused with measures of patient experience or satisfaction which usually relate to the whole experience of the journey of care of the patient rather than the outcomes of the care. Both are important to ensure that healthcare is high qualty.
HIS involvement with initiatives underway in NHSScotland regarding PROMs. SurveyResearch project – Deepa will describe
To help inform this work, a national survey was undertaken in COPD, Mental Health and Orthopedic services to gauge the current use of PROMs. Although not meant to be representative, we found that:39% of 103 respondents reported currently using PROMs48 different PROMs were mentioned; we excluded some reports of using patient satisfaction measures which are not strictly PROMs. This suggests that guidance on which PROMs to use and clarification of the definition of a PROM may be helpful to make the use more systematic. The most common reported use of PROMs was to monitor individual patients. This suggests a disparity between national and local interest in using PROMs. The national interest is in using PROMs for quality improvement while the current health professional interest is in using PROMs for individual patient monitoring. It may be important to consider the dual use of PROMs data to prevent compromising the benefits that health professionals would like to see.There were some reported difficulties with using PROMs with people with low literacy or lack of comprehension. PROMs initiatives could therefore exclude parts of the population who struggle to read or find PROMs too complex. It is then important to consider the accessibility of PROMs initiatives before they are implemented to prevent such exclusion. NOW DEEPA
-collaborative 27 month project between University of Glasgow, Dundee and Healthcare Improvement Scotland-addressing the exclusion challenges that PROMs might face to ultimately support the inclusive use of PROMs across the service.
While researchers generally discuss PROMs with patients to decide on the content before finalizing it, they do not generally include people with learning disabilities or low literacy skills. When PROMs are put into practice, people with learning disabilities or low literacy skills may struggle to complete them. This means they may be left out of quality improvement and/orcondition monitoring processes that use PROMs.This could be an important problem because as many as 1 in 5 adults have low literacy skills and there are approximately 1.5 million people with learning disabilities in the UK. Giving PROMs to those who will struggle to read them might result in inaccurate completion or further alienation of these patients from healthcare practices.
COPD was a good case study....
Professionals – their perspective did not account for confidentiality and distractions, and saw waiting rooms as easiest to get the PROM back
Professionals – their perspective did not account for confidentiality and distractions, and saw waiting rooms as easiest to get the PROM back
