The Impact of Paediatric Neuromuscular Disorders on Parents' Health-Related Quality of Life and Family Functioning

Abstract

Aims: This study aimed to evaluate the impact of hereditary neuromuscular disorders on parent's health-related quality of life and family functioning, and to study the correlation of parental stress on family impact. Methods: This retrospective cross-sectional study analysed responses from 80 parents of 80 children with different neuromuscular disorders on two self-reported questionnaires: the Chinese version of PedsQL™Family Impact Module and the Parental Stress Scale. Results: We found the Parental Stress Score exhibited a moderate negative correlation with the PedsQL™Family Impact Module total score (Pearson correlation coefficient: -0.55). Among different neuromuscular disorders, spinal muscular atrophy had the worst negative family impact. Additionally, a non-walking status had moderate negative effects on family impact (T-test effect size: 0.71). Conclusion: Neuromuscular disorders cause a significant negative family impact. Evaluation of parental stress, parental health-related quality of life and family functioning should be part of the standard of care for affected families.