The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)

Summary & key facts

This study measured health-related quality of life (HRQoL) for people with ME/CFS using the EQ-5D-3L questionnaire and Danish value weights. Responses came from 105 people who reported having ME/CFS and were compared to a general population sample of 23,392. The average HRQoL score for the ME/CFS group was much lower (0.47) than the population average (0.85). After adjusting for age, gender, education and 18 other self-reported conditions, ME/CFS was associated with a large loss in HRQoL (about -0.29). The authors note the finding is clear in this sample, but they warn that selection bias and self-reporting could affect the results.

Key facts:

• The unadjusted EQ-5D-3L mean score for ME/CFS patients in this study was 0.47 (95% CI 0.41–0.53).
• The population reference mean EQ-5D-3L score was 0.85 (95% CI 0.84–0.86) in the North Denmark sample (n = 23,392).
• After adjusting for gender, age, education and 18 self-reported conditions, ME/CFS was estimated to reduce HRQoL by about 0.29 on the EQ-5D index (adjusted disutility ≈ -0.29; 95% CI approximately -0.34 to -0.21).
• The ME/CFS sample came from members of the Danish ME/CFS Patient Association: 105 people self-reported ME/CFS and 103 had valid EQ-5D responses for the unadjusted estimate.
• On the EQ-5D-3L scale used here, index scores range from -0.624 (states considered worse than death) to 1.000 (full health).
• Among the 20 conditions compared in the paper, ME/CFS had the lowest unadjusted EQ-5D-3L mean in this study.
• The authors note limitations including possible selection bias (surveying a patient association), self-reported diagnoses, and a 3–4 year time gap between the ME/CFS and population samples.

Abstract

The EQ-5D-3L-based HRQoL of ME/CFS is significantly lower than the population mean and the lowest of all the compared conditions. The adjusted analysis confirms that poor HRQoL of ME/CFS is distinctly different from and not a proxy of the other included conditions. However, further studies are needed to exclude the possible selection bias of the current study.

Topics

Fibromyalgia and Chronic Fatigue Syndrome Research Resilience and Mental Health

Categories

Health Sciences Medicine Psychiatry and Mental health

Tags

Chronic fatigue syndrome Disease Encephalomyelitis Health related quality of life Immunology Internal medicine Medicine Multiple sclerosis Nursing Physical therapy Quality of life (healthcare)

Conditions & symptoms

Anxiety Chronic Pain Depression Sleep disorder Chronic pain Difficulty focusing Lack of energy or motivation Poor sleep Sadness or low mood