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

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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.

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Funding

Preparation of the manuscript was supported by a Grant from the National Heart, Lung, and Blood Institute (1R01HL127260-01; 1F32HL131353), and an MD Anderson Cancer Center Support Grant from the National Cancer Institute (P30 CA016672). The funding agency played no role in study design, in the collection, analysis and interpretation of data, in the writing of the report, or in the decision to submit the article for publication.

Author information

Authors and Affiliations

  1. Department of Psychology, Rice University, Houston, TX, USA

    Kyle W. Murdock & Christopher P. Fagundes

  2. Department of Symptom Research, The University of Texas MD Anderson Cancer Center, 1515 Holcombe Blvd., Unit 1450, Houston, TX, 77030, USA

    Xin Shelley Wang, Qiuling Shi, Charles S. Cleeland & Christopher P. Fagundes

  3. Bateman Horne Center of Excellence, Salt Lake City, UT, USA

    Suzanne D. Vernon

Authors
  1. Kyle W. Murdock
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  2. Xin Shelley Wang
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  3. Qiuling Shi
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Correspondence to Xin Shelley Wang.

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Murdock, K.W., Wang, X.S., Shi, Q. et al. The utility of patient-reported outcome measures among patients with myalgic encephalomyelitis/chronic fatigue syndrome. Qual Life Res 26, 913–921 (2017). https://doi.org/10.1007/s11136-016-1406-3

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  • DOI: https://doi.org/10.1007/s11136-016-1406-3

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