Use and Accessibility of Patient Reported Outcome Measures for COPD:
Including people with low literacy skills and/or learning difficulties
Deepa Jahagirdar, Sally Wyke, Karen Ritchie, Thilo Kroll
some contextWhat is a PROM?
What might be a challenge?
Why do we want to use it?
•Work on developing PROMs does not tend to include people with low literacy skill or learning difficulties
•Might benefit from specific administration or formatting
•This lack of work may result in these groups’ exclusion them from the quality improvement process
•COPD is a good case study
Lots of PROMs
Data
Improve quality
See impact
this studywhat?
Ease of Use Accessibility
St George Respiratory Questionnaire (SGRQ)
EuroQol-5D (EQ5D)
&&
People with low literacy skills or learning
difficultiesHealth Professionals People with COPD
Interviews
Interviews Focus Groups
this studyhow?
&
Talking Mats
?
colours
Accessibility
Ease of Use
1. How does this PROM look?2. Is there anything that could make it look better?Ex. Colours
1. Where would you prefer to complete this questionnaire? Why?Ex. Home Waiting Room2. When would you prefer to complete this questionnaire? Why?Ex. When you arriveAfter you go home3. Would you prefer someone to help you complete this questionnaire? Who?Ex. DoctorNurseFamily member
this studyhow?
Listened to what people said
Typed it up
Went through all the text to identify the themes in what people said
Kept track of who was saying what
Organized these themes according to whether they were about ‘Ease of Use’, ‘Accessibility’ or something else
Ease of UseIssue Patients Professionals
Trustworthy help Want people who know them to help; not confident to try forms alone
Patients could be handed forms and offered help if needed
Confidentiality Concerned about people seeing their responses in the waiting room
Not mentioned
Time There would not be enough time during appointments
Might not have enough time to complete forms with patients
No Distractions Waiting rooms are far too distracting leading to mistakes
Not mentioned
Completion in waiting room Opposed Advocated
Understanding the need and benefit of a PROM
Advocated Advocated
what did we find?
what did we find?
Ease of Use
Not much difference between people with low literacy/learning difficulties 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.
what did we find?Accessibility
Issue Patients Professionals
Challenges for people with low literacy/learning difficultiesPROM Format
Visual Analogue Scale Confusing what to do Could be much simpler
Wording Asking about health state ‘today’ doesn’t make sense, some words are complicated
Not mentioned
Consistency in questions Some SGRQ questions require too much recall or are too long
Similar questions and response options are better
Pictures Mixed views on the use of pictures
Pictures would help guide patients
what did we find?Accessibility
Issue Patients Professionals
Challenges for people with low literacy/learning difficultiesPROM Format
Visual Analogue Scale Confusing what to do Could be much simpler
Wording Asking about health state ‘today’ doesn’t make sense, some words are complicated
Not mentioned
Consistency in questions Some SGRQ questions require too much recall or are too long
Similar questions and response options are better
Pictures Mixed views on the use of pictures
Pictures would help guide patients
what did we find?Accessibility
Issue Patients Professionals
Challenges for people with low literacy/learning difficultiesPROM Content PROM Format
Font Sizes & Tick Boxes Should be bigger Should be bigger
Alignment SGRQ looked messy SGRQ should be aligned consistently
Colours Generally against Generally against
what did we find?AccessibilityPROM Content PROM Format
Embarrassment [a patient] who I was completely losing the battle with, it was only when his GP phoned me up and said, you know, you do realise he can’t read...that finally we were able to try to get some headway into things and I started drawing lots of pictures but, you know, guys who are 32 and work as tree surgeons with chainsaws, you wouldn’t think they would be illiterate.
Continuous Modification
Different abilities
why is this important?
Paper-based EQ5D and SGRQ may be alright with modifications like bigger font sizes, alignment and tick boxes. People with low literacy skills/learning difficulties could also benefit from pictures.
vs.
The location to complete a PROM is an important consideration for making it easy to use for people with low literacy skills/learning difficulties (and without). This has to do with confidentiality, support, time and concentration.
Generally, there were not too many differences between patients and professionals’ views on what would make PROMs more accessible and easy to use, although they emphasized different issues.
why is this important?
Confidence affects people’s ability to complete forms on their own, regardless of literacy or actual ability
It’s really hard but then Peter has had people doing forms for him all his life and it’s not because he doesn't, it’s like every time you go to the dentist it’s like everything is fine, he would never say any different, it’s not that he doesn’t know any different it’s just that’s what he says.
Seeing the benefit of PROMs is an important factor in encouraging people to complete it
to summarize...A supportive system that allows people to complete PROMs appropriately
Inclusive.
Lots of PROMs
Data
Improve quality
See impact
thank you
Acknowledgements
Technology Strategy Board
Contact
Research Participants
Knowledge Transfer Partners-Healthcare Improvement Scotland-University of Glasgow-University of Dundee