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/
A few weeks’ ago we reported in a Webinar by Dr Karen Ritchie and Deepa Jahagirdar (if you missed it, you can find the link to the recording on our blog) about a project between the universities of Glasgow and Dundee and Healthcare Improvement Scotland that examines the usability and accessibility of patient-reported outcome measures or PROMS for people with learning disabilities and low literacy. The research has led to the development of a reference manual or user guide, which is intended for health professionals who are tasked with PROM measurement in clinical practice and who may have to reflect on the practice of using PROMS with people with learning disabilities or low literacy.
Please assist us with comments about our new reference user guide for health professionals. The purpose of the reference guide is to highlight challenges in routine outcome measurement when working with people with low literacy and/or learning disabilities. Tell us, what you think. Will the guide be useful? How can we improve it? What will enhance its usefulness and adoption by health professionals?
- What are your first impressions?
- What do think about the format/presentation of the guide?
- What about the content? Is it relevant?
- Is the language we use in the guide appropriate?
- Is the document comprehensive enough or is anything missing?
- Is the guide accurate and correct?
- How could you use it in practice?
- Is there anything else you want to let us know about?
You can also find a pdf version of the PROMS Use Reference Guide Low Literacy and Learning Disability. Please review the reference guide below and send your comments by email to Deepa.Jahagirdar @nhs.net