Division of Infection and Immunity, School of Medicine, Cardiff University, Cardiff, UK.
School of Life and Medical Sciences, University of Hertfordshire, Hatfield, UK.
Health Qual Life Outcomes. 2021 Aug 5;19(1):194. doi: 10.1186/s12955-021-01819-4.
A person's chronic health condition or disability can have a huge impact on the quality of life (QoL) of the whole family, but this important impact is often ignored. This literature review aims to understand the impact of patients' disease on family members across all medical specialities, and appraise existing generic and disease-specific family quality of life (QoL) measures.
The databases Medline, EMBASE, CINHAL, ASSIA, PsycINFO and Scopus were searched for original articles in English measuring the impact of health conditions on patients' family members/partner using a valid instrument.
Of 114 articles screened, 86 met the inclusion criteria. They explored the impact of a relative's disease on 14,661 family members, mostly 'parents' or 'mothers', using 50 different instruments across 18 specialities including neurology, oncology and dermatology, in 33 countries including the USA, China and Australia. These studies revealed a huge impact of patients' illness on family members. An appraisal of family QoL instruments identified 48 instruments, 42 disease/speciality specific and six generic measures. Five of the six generics are aimed at carers of children, people with disability or restricted to chronic disease. The only generic instrument that measures the impact of any condition on family members across all specialities is the Family Reported Outcome Measure (FROM-16). Although most instruments demonstrated good reliability and validity, only 11 reported responsiveness and only one reported the minimal clinically important difference.
Family members' QoL is greatly impacted by a relative's condition. To support family members, there is a need for a generic tool that offers flexibility and brevity for use in clinical settings across all areas of medicine. FROM-16 could be the tool of choice, provided its robustness is demonstrated with further validation of its psychometric properties.
一个人的慢性健康状况或残疾会对整个家庭的生活质量（QoL）产生巨大影响，但这种重要的影响往往被忽视。本文献综述旨在了解患者疾病对所有医学专业家庭成员的影响，并评估现有的通用和疾病特异性家庭生活质量（QoL）测量工具。
检索了 Medline、EMBASE、CINHAL、ASSIA、PsycINFO 和 Scopus 数据库，以获取使用有效工具测量健康状况对患者家庭成员/伴侣影响的英文原始文章。
在筛选出的 114 篇文章中，有 86 篇符合纳入标准。这些研究探讨了 14661 名家庭成员（主要是“父母”或“母亲”）因亲属疾病而受到的影响，涉及包括神经病学、肿瘤学和皮肤病学在内的 18 个专科的 50 种不同工具，来自包括美国、中国和澳大利亚在内的 33 个国家。这些研究表明，患者的疾病对家庭成员的影响巨大。对家庭 QoL 工具的评估确定了 48 种工具，其中 42 种是疾病/专科专用工具，6 种是通用工具。这 6 种通用工具中有 5 种是针对儿童照顾者、残疾人和慢性病患者的。唯一一种可以测量所有专科患者疾病对家庭成员影响的通用工具是家庭报告结局测量（FROM-16）。虽然大多数工具表现出良好的信度和效度，但只有 11 种工具报告了反应性，只有一种工具报告了最小临床重要差异。
家庭成员的 QoL 受到亲属病情的极大影响。为了支持家庭成员，需要一种通用工具，该工具在临床医学中具有灵活性和简洁性，适用于医学的各个领域。FROM-16 可以作为首选工具，但需要进一步验证其心理测量学特性来证明其稳健性。
