School of Medicine, Cardiff University, Cardiff CF14 4XN, UK.
Buckinghamshire Healthcare NHS Trust, Amersham Hospital, Amersham HP7 0JD, UK.
Medicina (Kaunas). 2021 Jan 7;57(1):43. doi: 10.3390/medicina57010043.
To explore the impacts that Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has on the patient and their family members using the WHOQOL-BREF (Abbreviated World Health Organisation Quality of Life questionnaire) and FROM-16 (Family Reported Outcome Measure-16) quality of life assessments. A quantitative research study using postal questionnaires was conducted. A total of 39 adult volunteers expressed an interest in participating in the study: 24 returned appropriately completed questionnaires. Patients with ME/CFS completed the WHOQOL-BREF and up to four of their family members completed the FROM-16 questionnaire. ME/CFS negatively affects the quality of life of the patient (median scores WHOQOL-BREF: Physical health = 19, Psychological = 44, Social relationships = 37.5, Environment = 56, = 24) and their family members' quality of life (FROM-16: Emotional = 9.5, Personal and social = 11.5, Overall = 20.5, = 42). There was a significant correlation between the patient's reported quality of life scores and their family members' mean FROM-16 total scores. This study identifies the major impact that having an adult family member with ME/CFS has on the lives of partners and of other family members. Quality of life of ME/CFS patients was reduced most by physical health compared to the other domains. Quality of life of family members was particularly impacted by worry, family activities, frustration and sadness. This highlights the importance of measuring the impact on the lives of family members using tools such as the FROM-16 in the ME/CFS clinical encounter and ensuring appropriate support is widely available to family members.
使用世界卫生组织生活质量量表简表（WHOQOL-BREF）和家庭报告结局测量-16 量表（FROM-16）评估肌痛性脑脊髓炎/慢性疲劳综合征（ME/CFS）对患者及其家庭成员的影响。采用邮寄问卷的定量研究方法进行了此项研究。共有 39 名成年志愿者表示有兴趣参与研究，其中 24 名志愿者返回了填写完整的问卷。ME/CFS 患者填写 WHOQOL-BREF 量表，最多有 4 名家庭成员填写 FROM-16 量表。ME/CFS 对患者（WHOQOL-BREF 量表的健康状况评分为 19 分，心理状况评分为 44 分，社会关系评分为 37.5 分，环境评分为 56 分，总体健康评分为 24 分）和家庭成员（FROM-16 量表的情感评分为 9.5 分，个人和社会评分为 11.5 分，总体评分为 20.5 分，总分评分为 42 分）的生活质量产生负面影响。患者报告的生活质量评分与家庭成员的 FROM-16 总分平均值之间存在显著相关性。本研究确定了成年家庭成员患有 ME/CFS 对伴侣和其他家庭成员生活的主要影响。与其他领域相比，ME/CFS 患者的生活质量受身体健康状况的影响最大。家庭成员的生活质量受到担忧、家庭活动、挫折感和悲伤的影响尤其严重。这突出表明，在 ME/CFS 临床就诊中，使用 FROM-16 等工具衡量对家庭成员生活的影响，并确保广泛提供适当的支持，对患者的治疗非常重要。
