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Deepa Jahagirdar, Sally Wyke, Karen Ritchie, Thilo Kroll

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 context. What is a PROM?. some context. What is a PROM?. Why do we want to use it?.

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Deepa Jahagirdar, Sally Wyke, Karen Ritchie, Thilo Kroll

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  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? Data Lots of PROMs See impact Improve quality

  4. some context What is a PROM? Why do we want to use it? Data Lots of PROMs What might be a challenge? See impact • Work on developing PROMs does not tend to include people with low literacy skill or learning difficulties Improve quality • This lack of work may result in these groups’ exclusion them from the quality improvement process • Might benefit from specific administration or formatting • COPD is a good case study

  5. this studywhat? St George Respiratory Questionnaire (SGRQ) & EuroQol-5D (EQ5D) Ease of Use Accessibility Interviews People with low literacy skills or learning difficulties Health Professionals People with COPD

  6. this studywhat?

  7. this studyhow? Accessibility 1. How does this PROM look? 2. Is there anything that could make it look better? Ex. Colours & Interviews Focus Groups Talking Mats Ease of Use ? 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 colours

  8. 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

  9. Ease of Use what did we find?

  10. Ease of Use what did we find? 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. Challenges for people with low literacy/learning difficulties PROM Format PROM Content Accessibility what did we find?

  12. Challenges for people with low literacy/learning difficulties PROM Format PROM Content Accessibility what did we find?

  13. Challenges for people with low literacy/learning difficulties PROM Content PROMFormat Accessibility what did we find?

  14. PROM Content PROMFormat Challenges for people with low literacy/learning difficulties Accessibility what did we find? Continuous Modification Different abilities 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.

  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. 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. vs. 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 Data Lots of PROMs See impact Improve quality Inclusive.

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

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