Centre for Medical Education, School of Medicine, Cardiff University, Cardiff, UK
Dermatology, Buckinghamshire Healthcare NHS Trust, Amersham, UK.
BMJ Open. 2022 May 2;12(5):e058128. doi: 10.1136/bmjopen-2021-058128.
The 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).
A patient-partner, multinational, subject-initiated, cross-sectional online survey.
International survey using ME/CFS charities, support groups and social media.
Participants 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.
EuroQoL-5 Dimension (EQ-5D-3L), completed by people with ME/CFS, and Family Reported Outcome Measure (FROM-16) questionnaire, completed by family members.
The 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<0.0001). Family members were most impacted emotionally by worry, frustration and sadness and personally by family activities, holidays, sex life and finances.
To the best of our knowledge, this is the largest study on the impact of the QoL of persons with ME/CFS and their family members. While open participation surveys are limited by selection bias, this research has revealed a significant worldwide burden of ME/CFS on the QoL of people with ME/CFS and their family members.
本研究旨在评估肌痛性脑脊髓炎/慢性疲劳综合征（ME/CFS）对 ME/CFS 患者及其亲属或伴侣（家庭成员）生活质量（QoL）的影响。
患者-伴侣，多国，主题发起，横断面在线调查。
国际调查使用 ME/CFS 慈善机构、支持团体和社交媒体。
参与者通过社交媒体自行选择招募。纳入标准为年龄 18 岁或以上，并由医疗专业人员报告 ME/CFS 诊断。来自 30 个国家的 1418 名 ME/CFS 患者及其 1418 名家庭成员参加了这项调查。患有 ME/CFS 的参与者平均年龄为 45.8 岁（范围 18-81 岁），主要为女性（1418 名中的 1214 名（85.6%））。家庭成员的平均年龄为 51.9 岁（范围 18-87 岁），主要为男性（女性：1418 名中的 504 名（35.5%））。991 名（70%）家庭成员是 ME/CFS 患者的伴侣。
欧洲五维健康量表（EQ-5D-3L），由 ME/CFS 患者完成，以及家庭报告结果测量（FROM-16）问卷，由家庭成员完成。
ME/CFS 患者的总体健康状况在视觉模拟量表上的平均得分为 33.8（0=最差，100=最佳）。ME/CFS 患者受日常活动、疼痛、移动性、自理能力的影响最大，受焦虑的影响最小。对于家庭成员，总体平均 FROM-16 评分得分为 17.9（0=无影响，32=影响最严重），表明对 QoL 有重大影响。ME/CFS 患者与其家庭成员之间的 QoL 影响呈显著正相关（p<0.0001）。家庭成员在情感上受担忧、沮丧和悲伤影响最大，在个人方面受家庭活动、假期、性生活和财务状况影响最大。
据我们所知，这是关于 ME/CFS 患者及其家庭成员生活质量影响的最大规模研究。虽然开放性参与调查受到选择偏差的限制，但这项研究揭示了 ME/CFS 对全球 ME/CFS 患者及其家庭成员生活质量的重大负担。
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