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. 2017 Apr;26(4):913-921.
doi: 10.1007/s11136-016-1406-3. Epub 2016 Sep 6.

The utility of patient-reported outcome measures among patients with myalgic encephalomyelitis/chronic fatigue syndrome

Kyle W Murdock  1 , Xin Shelley Wang  2 , Qiuling Shi  3 , Charles S Cleeland  3 , Christopher P Fagundes  1   3 , Suzanne D Vernon  4
Affiliations

The utility of patient-reported outcome measures among patients with myalgic encephalomyelitis/chronic fatigue syndrome

Kyle W Murdock et al. Qual Life Res. 2017 Apr.

Abstract

Purpose: Debilitating fatigue is a core symptom of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS); however, the utility of patient-reported symptom outcome measures of fatigue for ME/CFS patients is problematic due to ceiling effects and issues with reliability and validity. We sought to evaluate the performance of three patient-reported symptom measures in a sample of ME/CFS patients and matched controls.

Methods: Two hundred and forty ME/CFS patients and 88 age, sex, race, and zip code matched controls participated in the study. Participants completed the Multidimensional Fatigue Inventory-20, DePaul Symptom Questionnaire, and RAND SF-36.

Results: The general and physical fatigue subscales on Multidimensional Fatigue Inventory-20, as well as the role of physical health on the RAND SF-36, demonstrated questionable or unacceptable internal consistency and problematic ceiling effects. The DePaul Symptom Questionnaire demonstrated excellent internal reliability, and less than 5 % of participants were at the ceiling on each subscale. The post-exertional malaise subscale on the DePaul Symptom Questionnaire demonstrated excellent clinical utility as it was able to differentiate between ME/CFS patients and controls (OR 1.23, p < .001) and predicted ceiling effects on other patient-reported outcome subscales. A score of 20 on the post-exertional malaise subscale of the DePaul Symptom Questionnaire optimally differentiated between patients and controls.

Conclusions: Significant ceiling effects and concerns with reliability and validity were observed among Multidimensional Fatigue Inventory-20 and RAND SF-36 subscales for ME/CFS patients. The DePaul Symptom Questionnaire addresses a number of concerns typically identified when using patient-reported outcome measures with ME/CFS patients; however, an improved multidimensional patient-reported outcome tool for measuring ME/CFS-related symptoms is warranted.

Keywords: Chronic fatigue syndrome; Fatigue; Myalgic encephalomyelitis; Sensitivity; Symptom measurement.

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Conflict of interest statement

Conflicts of interest: The authors declare that they have no conflict of interest.

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