Patient reported outsomes (PROMS) in COPD not validated for people with learning disabilities and low literacy

A newly published review paper demonstrate that generic and condition-specific patient-reported outcome measures have not been developed with people who may struggle with reading and comprehension. It is estimated that 1 in 5 people in the UK have difficulty in locating specific services in the Yellow Pages or reading a newspaper. And we see a growing number of people developing cognitive impairments during the life course (e.g dementia). Cumulatively the population segment excluded through measures deemed to reflect ‘the patient’s perspective’ (although more often than not it is rather a response on a measure to what researchers and clinicians think matters!) is substantial. The drive to routinely use these measures as integral to ‘quality improvement’ in services comes at the cost of excluding people who cannot engage meaningfully with these tools from this process. This would be a violation of equality, disability and human rights legislation and has the potential of widening inequalities. The review paper can be found here #[Patient Reported Outcomes in COPD| http://www.ncbi.nlm.nih.gov/m/pubmed/23417577/

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What makes Patient-Reported Outcomes (PROMS) difficult to use for people with learning disabilities?

We have reported earlier on a Knowledge Transfer Partnership project that focuses on the usability of PROMS for people with learning disabilities and/or literacy. Also, we recently hosted a Webinar on this topic and project. Today, we are providing you with a weblink to an audio cast of a presentation on the topic given earlier this year as part of the Open University supported and hosted Social History of Learning Disability Conference in Milton Keynes. This year’s conference focus was ‘Health’. The two-day event was attended by people with learning disabilities, researchers, health and social care practitioners and disability advocate.

In a few weeks time, the project team will be running a workshop and dissemination event in Glasgow.

Patient Reported Outcome Measures (PROMS): Challenges for people with low literacy and learning disabilities

The May 9th SDHI Webinar “Patient Reported Outcome Measures (PROMS): Challenges for people with low literacy and learning disabilities”, which was presented by Karen Ritchie, Head of Knowledge Management and Deepa Jahagirdar, Research Associate at Health Improvement Scotland, is now available to view on line!

The full webinar can be viewed here