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 contextWhat is a PROM?

Why do we want to use it?

Lots of PROMs

Data

Improve quality

See impact

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

this studywhat?

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

deepa.jahagirdar@nhs.net

Knowledge Transfer Partners-Healthcare Improvement Scotland-University of Glasgow-University of Dundee