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Factors affecting the health-related quality of life of caregivers of patients with muscular dystrophy

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Abstract

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.

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Acknowledgements

This study was supported by the National Science Council (NSC) [NSC-89-2614-B-035-005-M47, NSC90-2614-B-037-004-M47, and NSC91-2614-B-037-009-M47 (to YJL)]. We are most grateful to the study participants for their contribution to this study.

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Authors and Affiliations

  1. Department of Physical Therapy, College of Health Sciences, Kaohsiung Medical University, No. 100 Shih-Chuan 1st Rd., Kaohsiung, 80708, Taiwan

    Yi-Jing Lue

  2. Department of Physical Medicine and Rehabilitation, Kaohsiung Medical University Hospital, Kaohsiung, Taiwan

    Yi-Jing Lue

  3. Department of Neurology, Kaohsiung Chang Gung Memorial Hospital, Kaohsiung, Taiwan

    Shun-Sheng Chen

  4. Department of Orthopaedics, School of Medicine, College of Medicine, Kaohsiung Medical University, Kaohsiung, Taiwan

    Yen-Mou Lu

  5. Division of Pediatric and Spinal Orthopedics, Department of Orthopedics, Kaohsiung Medical University Hospital, Kaohsiung, Taiwan

    Yen-Mou Lu

Authors
  1. Yi-Jing Lue
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Correspondence to Yi-Jing Lue.

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The authors declare that they have no conflict of interest.

Ethical standards

The study was approved by the Institutional Review Board of Kaohsiung Medical University Hospital in accordance with the Declaration of Helsinki and its later amendments. All participants gave their written informed consent prior to their inclusion in the study.

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Lue, YJ., Chen, SS. & Lu, YM. Factors affecting the health-related quality of life of caregivers of patients with muscular dystrophy. J Neurol 265, 1548–1556 (2018). https://doi.org/10.1007/s00415-018-8878-8

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  • DOI: https://doi.org/10.1007/s00415-018-8878-8

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