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|

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