Department of Physical Therapy, College of Health Sciences, Kaohsiung Medical University, No. 100 Shih-Chuan 1st Rd., Kaohsiung, 80708, Taiwan.
Department of Physical Medicine and Rehabilitation, Kaohsiung Medical University Hospital, Kaohsiung, Taiwan.
J Neurol. 2018 Jul;265(7):1548-1556. doi: 10.1007/s00415-018-8878-8. Epub 2018 Apr 26.
Muscular dystrophy (MD) is a group of progressive muscle weakness diseases. The caregiver burden, increasing as the disease progresses, can be associated with impaired health-related quality of life (HRQOL). The aims of this study were to investigate the HRQOL in caregivers of patients with MD and identify the factors associated with HRQOL. A cross-sectional assessment of caregiver HRQOL was performed with the Short Form-36 and compared with norms. The factors affecting HRQOL were investigated by patient and caregiver characteristics. The Muscular Dystrophy Functional Rating Scale was used to assess the functional status (mobility, basic activities of daily living, arm function, and impairment) of patients. The demographic data and social interaction activities of caregivers were assessed. Caregivers (n = 62) had poor HRQOL. Caregiver HRQOL was associated with the patient's functional status, especially in the domains of Vitality and Mental Health. Numerous visits by neighbors and close friends of the caregiver family indicated better HRQOL (in the body pain, general health, vitality, role emotion and mental health domains). Caregiver HRQOL was associated with caregiver education level, while patient age, caregiver age, length of caregiving, and family income were not. These findings demonstrate that caregivers have poor HRQOL, and the mental domain of quality of life is associated with the patient's functional status, social interaction, and caregiver education level. We suggest that rehabilitation programs focus on caregiver HRQOL, promote the patient's functional status with assistive technology, enhance professional caring techniques, and encourage participation in social groups to improve caregiver HRQOL.
肌肉萎缩症（MD）是一组进行性肌肉无力疾病。随着疾病的进展，照顾者的负担会增加，这可能会导致健康相关生活质量（HRQOL）受损。本研究的目的是调查 MD 患者照顾者的 HRQOL，并确定与 HRQOL 相关的因素。使用 36 项简短表格对照顾者的 HRQOL 进行了横断面评估，并与标准进行了比较。通过患者和照顾者的特征调查了影响 HRQOL 的因素。使用肌肉萎缩症功能评定量表评估患者的功能状态（移动性、基本日常生活活动、手臂功能和损伤）。评估了照顾者的人口统计学数据和社会互动活动。照顾者（n=62）的 HRQOL 较差。照顾者的 HRQOL 与患者的功能状态相关，尤其是在活力和心理健康方面。照顾者家庭的邻居和亲密朋友多次来访表明 HRQOL 更好（在身体疼痛、一般健康、活力、情绪角色和心理健康方面）。照顾者的 HRQOL 与照顾者的教育水平有关，而与患者年龄、照顾者年龄、照顾时间长短和家庭收入无关。这些发现表明，照顾者的 HRQOL 较差，生活质量的心理领域与患者的功能状态、社会互动和照顾者的教育水平有关。我们建议康复计划注重照顾者的 HRQOL，通过辅助技术促进患者的功能状态，增强专业护理技术，并鼓励他们参加社会团体，以提高照顾者的 HRQOL。
