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

Area of Science:

• Pediatric Rehabilitation
• Neuromuscular Disorders
• Evidence Synthesis

Background:

• Medical advancements have increased survival rates for children with spinal muscular atrophy (SMA).
• A comprehensive review of SMA rehabilitation approaches, particularly comparing pre- and post-disease-modifying treatment eras, is lacking.
• Understanding current rehabilitation trends is crucial for optimizing care for pediatric SMA patients.

Purpose of the Study:

• To systematically review and analyze pediatric rehabilitation interventions and outcomes for spinal muscular atrophy (SMA).
• To identify trends in SMA rehabilitation approaches before and after the advent of disease-modifying treatments.
• To provide recommendations for future SMA rehabilitation based on a comprehensive literature analysis.

Main Methods:

• Systematic literature search of five databases and grey literature (2000-2024) for pediatric SMA rehabilitation studies.
• Independent dual-reviewer screening of titles and abstracts, with a third reviewer for disagreements.
• Intervention and outcome coding using the International Classification of Function (ICF) and analysis through the 'F-words for Childhood Disability' framework.

Main Results:

• 71 reports were retained after screening 2621 unique reports.
• Interventions primarily targeted impairment (50%) and environmental (27%) domains, with less focus on functioning (15%) and participation (8%).
• Rehabilitation outcomes predominantly measured impairment (42%) and functioning (43%), with limited data on participation (9%) and quality of life (6%).

Conclusions:

• Current SMA rehabilitation trends focus on addressing impairments, with an expectation of functional improvement.
• Recommendations include adopting the 'F-words' framework, utilizing individualized, multidisciplinary, goal-directed approaches.
• Incorporating the perspectives of children with SMA and their families is essential to enhance and innovate rehabilitation strategies.