Evaluating the ability of patient reported outcome measures to represent the functional limitation of people living with myalgic encephalomyelitis/chronic fatigue syndrome

0Citations
Citations of this article
7Readers
Mendeley users who have this article in their library.

This article is free to access.

Abstract

Aim: To identify activities which people with Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) report are impacted by their condition, and evaluate the ability of measures of function used by National Health Service (NHS) ME/CFS Services to represent these experiences. Method: 122 participants completed ME/CFS Service questionnaires reporting activities that they had reduced or stopped doing, as well as Patient Reported Outcome Measures (PROMs). These data were coded using the International Classification of Functioning, Disability and Health (ICF) using established linking rules. Matrices identified the agreement rate between the outcome measures and the participant-generated list. Activities which could not be coded against the ICF were grouped using content analysis. Results: Responses from participants related to codes from nine subsections of the ICF. The PROMs used by the ME/CFS service had agreement rates between 58% and 62.5% with the participant-generated list. The content analysis identified a range of activities that were meaningful to participants that they could no longer do. These included holidays and day trips, accessing the community independently, and sustaining activity into the evening. These were not captured in either the ICF or the service’s outcome measures. Conclusion: The list generated by participants referred to a wide range of activities, including some not captured by the ICF. Comparison against the outcome measures suggests that the measures used in many NHS ME/CFS services nationally capture patients’ experiences moderately well. However, there are activities that patients value that are not captured by these measures.

Cite

CITATION STYLE

APA

Jones, B., Bourne, C., & Gladwell, P. (2023). Evaluating the ability of patient reported outcome measures to represent the functional limitation of people living with myalgic encephalomyelitis/chronic fatigue syndrome. Fatigue: Biomedicine, Health and Behavior, 11(2–4), 83–93. https://doi.org/10.1080/21641846.2023.2175579

Register to see more suggestions

Mendeley helps you to discover research relevant for your work.

Already have an account?

Save time finding and organizing research with Mendeley

Sign up for free