Keywords:
Adolescent; Mental health; Neuromuscular diseases; Quality of life; Rehabilitation; Social participation
Abstract: Objective: To investigate quality of life (QOL) and psychosocial well-being in youth with neuromuscular disorders (NMDs) who are wheelchair users. Data Sources: MEDLINE, Embase, CINAHL, and PsycINFO (January 2004-April 2016) and reference lists of retrieved full-text articles. Study Selection: Peer-reviewed studies were included when data describing self-reported QOL and psychosocial well-being could be separately understood for those using wheelchairs and 12 to 22 years of age. There were 2058 records independently screened, and potentially eligible articles were obtained and examined by all reviewers. Twelve observational and 3 qualitative studies met the inclusion criteria. Data Extraction: Population representativeness, measurement tools, and outcomes, where possible, with comparison groups. Two reviewers independently appraised studies for risk of bias to internal validity and generalizability. Data Synthesis: Heterogeneity of measurement and reporting precluded meta-analysis. Data were cross-sectional only. Compared with same-age typically developing peers, physical QOL was scored consistently and significantly lower in youth with NMDs, whereas psychosocial QOL was not. Psychosocial QOL was highest in youth nonambulant since early childhood and in those recruited via single tertiary specialist clinics. Mental health and social participation could not be compared with same-age populations. Conclusions: Despite low physical QOL, psychosocial QOL in youth with NMDs appeared comparable with same-age peers. The psychosocial well-being of younger adolescents on degenerative disease trajectories appeared most compromised; however, the longitudinal effects of growing up with a NMD on mental health and social participation are unknown. Interpretation was hampered by poor description of participant age, sex and physical ability; lack of population-based recruitment strategies; and inconsistent use of age-appropriate measures. Understanding of self-reported QOL and psychosocial well-being in youth with NMDs transitioning to adulthood is limited.