Rehabilitation approaches used for children with spinal muscular atrophy: A scoping review based on the F-words framework

AimWith medical advances, children with spinal muscular atrophy (SMA) now survive. Literature reporting on SMA rehabilitation approaches before and after disease-modifying treatments has not been reviewed.MethodFive databases and grey literature were systematically searched for pediatric reports with a SMA rehabilitation focus, published between 2000-2024. Two independent reviewers screened titles and abstracts; a third reviewer resolved disagreements. Rehabilitation interventions and outcomes were extracted and coded using the International Classification of Function (ICF) Category Tool and analysed using the 'F-words for Childhood Disability' as an interpretive framework.ResultsWith duplicates removed, 2621 reports were screened, 268 reviewed and 71 retained for detailed extraction. Authors described interventions directed at impairment (50%), functioning (15%), participation (8%), and environmental (27%) domains. Rehabilitation outcomes focused on impairment (42%), functioning (43%), participation (9%), and quality of life (6%) outcomes.InterpretationThere is a trend in SMA rehabilitation to address impairments with hopes of translation to functional gains. Recommendations include applying the F-words framework, using individual goal-directed multi-disciplinary approaches, and considering the voices of children and families to broaden and re-imagine SMA rehabilitation.Protocol RegistryOpen Science Framework (https://osf.io/w47m8/).