ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2017
The utility of patient-reported outcome measures among patients with myalgic encephalomyelitis/chronic fatigue syndrome.
Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 40 papers.
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
40 citing papers in PubMed.
- Trial
- A Detoxification Intervention for Gulf War Illness: A Pilot Randomized Controlled Trial.International journal of environmental research and public health · 2019Trial
- 3D Virtual Reality Performance Metrics as a Future Fatigue Biomarker in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).Biomedicines · 2026Article
- Outcomes of ME/CFS following infectious mononucleosis: seven-year follow-up of a prospective study.Frontiers in medicine · 2026Article
- Two neurocognitive domains identified for patients with myalgic encephalomyelitis/chronic fatigue syndrome and post-acute sequelae of COVID-19.Frontiers in neurology · 2025Article
- Assessing Functional Capacity in Myalgic Encephalopathy/Chronic Fatigue Syndrome: A Patient-Informed Questionnaire.Journal of clinical medicine · 2024Article
- Advancing Research and Treatment: An Overview of Clinical Trials in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Future Perspectives.Journal of clinical medicine · 2024Review
- Mixed methods system for the assessment of post-exertional malaise in myalgic encephalomyelitis/chronic fatigue syndrome: an exploratory study.BMJ neurology open · 2024Article
- The influence of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) family history on patients with ME/CFS.Exploration of medicine · 2024Article
- Do diagnostic criteria for ME matter to patient experience with services and interventions? Key results from an online RDS survey targeting fatigue patients in Norway.Journal of health psychology · 2023Article
- Observational
- Exercise Training in Non-Hospitalized Patients with Post-COVID-19 Syndrome-A Narrative Review.Healthcare (Basel, Switzerland) · 2023Review
- Evaluating case diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): toward an empirical case definition.Disability and rehabilitation · 2023Article
- Myalgic Encephalomyelitis-Chronic Fatigue Syndrome Common Data Element item content analysis.PloS one · 2023Article
- Evaluating fatigue in patients recovering from COVID-19: validation of the fatigue severity scale and single item screening questions.Health and quality of life outcomes · 2022Article
- ME/CFS and Post-Exertional Malaise among Patients with Long COVID.Neurology international · 2022Article
- Differences in Symptoms among Black and White Patients with ME/CFS.Journal of clinical medicine · 2022Article
- Key Features of a Multi-Disciplinary Hospital-Based Rehabilitation Program for Children and Adolescents with Moderate to Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS.International journal of environmental research and public health · 2022Review
- Improvement of Long COVID symptoms over one year.Frontiers in medicine · 2022Article
- Activity monitoring and patient-reported outcome measures in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients.PloS one · 2022Observational
Corrections and comments
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Authors and funding
6 authors.
Funding
Abstract
purposeDebilitating 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.
methodsTwo 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.
resultsThe 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.
conclusionsSignificant 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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