Abstract

Objective: To investigate quality of life (QoL) and psychosocial wellbeing in youth with Neuromuscular Disorders (NMD) who are wheelchair users.

Data Sources: Medline, Embase, CINAHL and PsycINFO (January 2004 to April 2016) and reference lists of retrieved full-text papers.

Study Selection: Peer-reviewed studies were included when data describing self-reported QoL and psychosocial wellbeing could be separately understood for those using wheelchairs and aged 12-22 years old. 2058 records were independently screened and potentially eligible papers were obtained and examined by all reviewers. Twelve observational and three 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 generalisability.

Data Synthesis: Heterogeneity of measurement and reporting precluded meta-analysis. Data were cross-sectional only. Compared to same age typically developing peers, physical QoL was scored consistently and significantly lower in youth with NMD, whilst psychosocial QoL was not. Psychosocial QoL was highest in youth non-ambulant since early childhood and in those recruited via single tertiary specialist clinics. Mental health and social participation could not be compared to same age populations.

Conclusions: Despite low physical QoL, psychosocial QoL in youth with NMD appeared comparable to same age peers. The psychosocial wellbeing of younger adolescents on degenerative disease trajectories appeared most compromised, though the longitudinal impacts of growing up with NMD on mental health and social participation are unknown. Interpretation was hampered by poor description of participant age, gender and physical ability, lack of population based recruitment strategies and inconsistent use of age appropriate measures. Understanding of self-reported QoL and psychosocial wellbeing in youth with NMD transitioning to adulthood is limited.

Keywords

adolescent, youth, neuromuscular diseases, quality of life

Available for download on Wednesday, October 11, 2017

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Link to Publisher Version (DOI)

http://doi.org/10.1016/j.apmr.2016.10.011