Health-Related Quality of Life in Spinal Muscular Atrophy Patients and Their Caregivers—A Prospective, Cross-Sectional, Multi-Center Analysis

Camilla Wohnrade, Ann Kathrin Velling, Lucas Mix, Claudia D. Wurster, Isabell Cordts, Benjamin Stolte, Daniel Zeller, Zeljko Uzelac, Sophia Platen, Tim Hagenacker, Marcus Deschauer, Paul Lingor, Albert C. Ludolph, Dorothée Lulé, Susanne Petri, Alma Osmanovic, Olivia Schreiber-Katz

Research output: Contribution to journalArticlepeer-review

3 Scopus citations

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.

Original languageEnglish
Article number110
JournalBrain Sciences
Volume13
Issue number1
DOIs
StatePublished - Jan 2023
Externally publishedYes

Keywords

  • caregiver
  • caregiver burden
  • mental health
  • patient reported outcome measures
  • quality of life
  • spinal muscular atrophy

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