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- Title:
Health-Related Quality of Life in Spinal Muscular Atrophy Patients and Their Caregivers-A Prospective, Cross-Sectional, Multi-Center Analysis.
- Document type:
- Article; Journal Article
- Author(s):
- Wohnrade, Camilla; Velling, Ann-Kathrin; Mix, Lucas; Wurster, Claudia D; Cordts, Isabell; Stolte, Benjamin; Zeller, Daniel; Uzelac, Zeljko; Platen, Sophia; Hagenacker, Tim; Deschauer, Marcus; Lingor, Paul; Ludolph, Albert C; Lulé, Dorothée; Petri, Susanne; Osmanovic, Alma; Schreiber-Katz, Olivia
- Abstract:
- Spinal muscular atrophy (SMA) is a disabling disease that affects not only the patient’s health-related quality of life (HRQoL), but also causes a high caregiver burden (CGB). The aim of this study was to evaluate HRQoL, CGB, and their predictors in SMA. In two prospective, cross-sectional, and multi-center studies, SMA patients (n = 39) and SMA patient/caregiver couples (n = 49) filled in the EuroQoL Five Dimension Five Level Scale (EQ-5D-5L) and the Short Form Health Survey 36 (SF-36). Caregivers (CGs) additionally answered the Zarit Burden Interview (ZBI) and the Hospital Anxiety and Depression Scale (HADS). Patients were clustered into two groups with either low or high HRQoL (EQ-5D-5L index value <0.259 or >0.679). The latter group was mostly composed of ambulatory type III patients with higher motor/functional scores. More severely affected patients reported low physical functioning but good mental health and vitality. The CGB (mean ZBI = 22/88) correlated negatively with patients’ motor/functional scores and age. Higher CGB was associated with a lower HRQoL, higher depression and anxiety, and more health impairments of the CGs. We conclude that patient and CG well-being levels interact closely, which highlights the need to consider the health of both parties while evaluating novel treatments.
- Journal title abbreviation:
- Brain Sci
- Year:
- 2023
- Journal volume:
- 13
- Journal issue:
- 1
- Fulltext / DOI:
- doi:10.3390/brainsci13010110
- Pubmed ID:
- http://view.ncbi.nlm.nih.gov/pubmed/36672091
- TUM Institution:
- 1411; Klinik und Poliklinik für Neurologie
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