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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Multi-stakeholder event highlighted challenges in using standardised patient-reported outcome measures (PROMS) with low literacy and learning disabled populations

On Friday, 23 November hosted a well received dissemination event for a project funded as a Knowledge Transfer Project (KTP). The project was conducted in partnership between Healthcare Improvement Scotland and the Universities of Glasgow and Dundee. We have reported previously about this project and also presented a Webinar.
This project explored people’s views on ‘Patient Reported Outcome Measures’ (PROMs). These measures are health questionnaires patients complete in a clinic about their symptoms, health condition and current emotional Wellbeing. The NHS in England is using this set of very disparate measures to ascertain patient reported pre-post intervention effects for acute procedures such as knee and hip replacement surgery. The rationale is that these routinely collected data sources will inform decisions about health care improvement planning. Our project specifically focused on the accessibility of PROMs for people with low literacy and learning disabilities.
The research team has developed a guide that will help professionals to reflect about the appropriateness of using PROMS and how to administer them with assistance to avoid excluding people who may find it difficult to complete complex questionnaires. The guide is based on our discussions with patients and professionals about how PROMs could be made more accessible and easy to use. Eventually, the guide will be available on the NHS Knowledge Network website.
The event was used to launch the guide. We invited all stakeholders from many backgrounds, including service users with learning disabilities, health care practitioners, academics and policymakers. Around 30 people attended and listened and discussed four presentations, which were held by Richard Norris, Scottish Health Council; Deepa Jahagirdar, KTP Associate, Glasgow; Dr Eddie Duncan, University of Stirling; Dr Phyllis Easton, NHS Tayside and SDHI. The speakers focused on the role of PROMS in the context of Scottish Health Policy and Quality Improvement, the use of standardised outcome measures by clinical professionals, the invisibility of low literacy, and the PROMS project itself. We used several tools to ensure this event was accessible, inclusive and beneficial for everyone. For example, everyone had red and green cards. Attendees could use the red cards to stop speakers and ask questions and green cards to indicate the presentation was clear. Attendees were free to stop the presentations at any point, discuss the issues that were raised, and clarify points. This informality sparked interesting and informative discussion.
The dissemination event raised awareness about the NHS’ plans to use PROMs and the potential exclusion of people with low literacy and learning disabilities.


Public and professional consultation: Project seeks input into refinement of reference guide for health professionals

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