Image description. The photo shows a doctor talking to a patient with ME about their symptoms. The title reads: Patient Reported Outcome Measures (PROMs) in ME/CFS. ME Association logo bottom right.

Patient Reported Outcome Measures (PROMs) in ME/CFS

This week saw the publication of a study by Peter Gladwell and colleagues who reviewed the validity of the Chalder Fatigue Scale. They concluded, ‘There is a need for an assessment tool/PROM for clinical and research use in ME/CFS which has undergone content validation involving people living with ME/CFS'. The ME Association has commissioned just such a project which is being led by Professor Sarah Tyson, with Peter Gladwell and others as part of the clinical group.

Professor Tyson has issued the following statement:

This was a very well written and relevant paper that illustrated the pitfalls of failing to include people with lived experience when developing measurement tools, leading to poor quality data and misleading results.

In the MEA-funded Clinical Assessment Toolkit project we are working with people with ME/CFS and clinicians from ME/CFS specialist services to produce a suite of measurement tools that overcome these short-comings.

Well-developed assessment tools that represent people’s experience and produce robust, good quality information/data have several benefits for both people with ME/CFS and NHS specialist services.  First, and most importantly, they are a way for people to identify and summarise their difficulties, as described by the participants in 2 of the PROMs that we are developing: 

“Oh my goodness what an eye opener this survey is! I never knew all my strange symptoms could be attributed to ME! I'm glad I took part, I feel I've learned something useful.”

TIMES participant

“I’m just amazed how spot on the questions are. It's like a perfect print out to give to someone if they asked me what M.E is and how it affects me.”

TIMES participant

“I hadn't made the connection before this between happy emotional situations and PEM! Thank you, that's given me something to think about and factor in.”

PASS participant

“Completing this survey has really made me see how much my condition affects my life.”

PASS participant

Secondly, the information the tools provide can act as a starting point for discussions with the clinical team about people’s needs and priorities, and how to manage them. They can also be used as evidence of difficulties and limitations in applications for disability benefits, or workplace adjustments, for example.

Finally, when combined, all the elements of the toolkit can be used to assess how well NHS specialist services are performing, by identifying what they are doing well and areas for improvement.

The final two elements of the toolkit, which will assess patients’ needs (called a clinical needs assessment) and their satisfaction with NHS specialist services (also known as a patient reported experience measure) will examine these issues in more detail.

This information can be invaluable for NHS specialist services to develop a business case for service improvements. For example, demonstrating the need for more staff, input from different professions, or more flexible ways of working. The assessments in the toolkit could also be used as outcome measures in clinical trials, but this is a secondary purpose. 

With perfect timing, we are putting the finishing touches to the survey to test out the next assessment in the toolkit; The ME Activity Questionnaire (MEAQ). This aims to assess activity levels. We will publicise the link to complete the survey in a couple of weeks, via the MEA newsletter.

We have been overwhelmed and humbled by the thousands (literally!) of people who have supported the project so far, by completing the surveys and providing invaluable feedback about the tools. These will be combined with the results of the statistical analysis to revise the tools so the final versions are ‘fit for purpose’.

The research team have personal experience of ME/CFS so we understand the energy cost of completing the surveys. Please know that your efforts are greatly appreciated and your feedback is being put to good use. Thank you so much!

Later this year, once the final version of the assessment tools are completed, we will be exploring how best to best make them available to people with ME/CFS and NHS specialist services. 

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