1. 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

2. some context What is a PROM?

3. some context What is a PROM? Why do we want to use it? Lots of PROMs Data Improve quality See impact

4. some context What 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

5. this study what? Ease of UseAccessibility St George Respiratory Questionnaire (SGRQ) EuroQol-5D (EQ5D) & People with low literacy skills or learning difficulties Health ProfessionalsPeople with COPD Interviews

6. Are PROMs considered easy to use or accessible and why? Are there differences in stakeholder perceptions of each PROM? What are the perceptions of how PROM accessibility and ease of use can be improved? this study what?

7. InterviewsFocus Groups this study how? & 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 Room 2. When would you prefer to complete this questionnaire? Why? Ex. When you arrive After you go home 3. Would you prefer someone to help you complete this questionnaire? Who? Ex. Doctor Nurse Family member

8. this study how? 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

9. Ease of Use IssuePatientsProfessionals Trustworthy helpWant people who know them to help; not confident to try forms alone Patients could be handed forms and offered help if needed ConfidentialityConcerned about people seeing their responses in the waiting room Not mentioned TimeThere would not be enough time during appointments Might not have enough time to complete forms with patients No DistractionsWaiting rooms are far too distracting leading to mistakes Not mentioned Completion in waiting roomOpposedAdvocated Understanding the need and benefit of a PROM Advocated what did we find?

10. 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.

11. what did we find? Accessibility IssuePatientsProfessionals Challenges for people with low literacy/learning difficultiesPROM Format Visual Analogue ScaleConfusing what to doCould be much simpler WordingAsking about health state ‘today’ doesn’t make sense, some words are complicated Not mentioned Consistency in questionsSome SGRQ questions require too much recall or are too long Similar questions and response options are better PicturesMixed views on the use of pictures Pictures would help guide patients

12. what did we find? Accessibility IssuePatientsProfessionals Challenges for people with low literacy/learning difficultiesPROM Format Visual Analogue ScaleConfusing what to doCould be much simpler WordingAsking about health state ‘today’ doesn’t make sense, some words are complicated Not mentioned Consistency in questionsSome SGRQ questions require too much recall or are too long Similar questions and response options are better PicturesMixed views on the use of pictures Pictures would help guide patients

13. what did we find? Accessibility IssuePatientsProfessionals Challenges for people with low literacy/learning difficultiesPROM Content PROM Format Font Sizes & Tick BoxesShould be bigger AlignmentSGRQ looked messySGRQ should be aligned consistently ColoursGenerally against

14. what did we find? Accessibility PROM ContentPROM 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

15. 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.

16. 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

17. to summarize... A supportive system that allows people to complete PROMs appropriately Inclusive. Lots of PROMs Data Improve quality See impact

18. thank you Acknowledgements Technology Strategy Board Contact Research Participants deepa.jahagirdar@nhs.net Knowledge Transfer Partners -Healthcare Improvement Scotland -University of Glasgow -University of Dundee