Impact of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on the quality of life of people with ME/CFS and their partners and family members: an online cross-sectional survey

ObjectivesThe aim of this study was to assess the impact of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on the quality of life (QoL) of people with ME/CFS and their relative or partner (family member).DesignA patient-partner, multinational, subject-initiated, cross-sectional online s...

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Bibliographic Details
Published in:BMJ open 2022-05, Vol.12 (5), p.e058128
Main Authors: Vyas, Jui, Muirhead, Nina, Singh, Ravinder, Ephgrave, Rachel, Finlay, Andrew Y
Format: Article
Language:English
Subjects:
Adolescent
Adult
Aged
Aged, 80 and over
Chronic fatigue syndrome
Consent
COVID-19
Cross-Sectional Studies
Demographics
Disease
Encephalomyelitis
Family
Fatigue Syndrome, Chronic - psychology
Female
Humans
Male
Middle Aged
Neurology
Patients
public health
Quality of Life
Questionnaires
social medicine
Statistical analysis
Surveys and Questionnaires
Young Adult
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Summary:ObjectivesThe aim of this study was to assess the impact of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on the quality of life (QoL) of people with ME/CFS and their relative or partner (family member).DesignA patient-partner, multinational, subject-initiated, cross-sectional online survey.SettingInternational survey using ME/CFS charities, support groups and social media.ParticipantsParticipants were self-selected with recruitment via social media. Inclusion criteria were aged 18 years or over and reported diagnosis of ME/CFS by health professional. 1418 people with ME/CFS and their 1418 family members from 30 countries participated in the survey. Participants with ME/CFS had a mean age of 45.8 years (range 18–81) and were predominantly women (1214 (85.6%) of 1418). Family members had a mean age of 51.9 years (range 18–87) and were predominantly men (women: 504 (35.5%) of 1418). 991 (70%) family members were partners of the people with ME/CFS.InterventionsEuroQoL-5 Dimension (EQ-5D-3L), completed by people with ME/CFS, and Family Reported Outcome Measure (FROM-16) questionnaire, completed by family members.ResultsThe mean overall health status on a Visual Analogue Scale for people with ME/CFS was 33.8 (0=worst, 100=best). People with ME/CFS were most affected by ability to perform usual activities, pain, mobility, self-care and least impacted by anxiety. For family members, the overall mean FROM-16 score was 17.9 (0=no impact, 32=worst impact), demonstrating a major impact on QoL. Impact on QoL was significantly correlated between the person with ME/CFS and their family member (p
ISSN:2044-6055
2044-6055
DOI:10.1136/bmjopen-2021-058128