Article

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.
CI - Copyright (c) 2016 American Congress of Rehabilitation Medicine. Published by
Elsevier Inc. All rights reserved.

Langue : ANGLAIS