Why the study?
The study was conducted to explore the impact of contractures on daily functioning and participation, as well as the impact of received contracture management, in adolescents and young adults with spinal muscular atrophy.
What is the perceived impact of contractures and their management on daily functioning in adolescents and young adults with spinal muscular atrophy?
What is the perceived impact of contractures and their management on daily functioning in adolescents and young adults with spinal muscular atrophy?
In non-ambulant adolescents and young adults with SMA, muscle weakness is perceived as a greater hindrance than contractures, highlighting the need for realistic and meaningful goals in contracture management.
Answers are grounded in this paper and cite their sources.
Contractures impose limited additional burden beyond weakness in non-ambulant SMA AYA; leaves open individualized, goal-oriented management amid disease-modifying therapies.
PURPOSE: Exploring the impact of contractures in adolescents and young adults (AYA) with spinal muscular atrophy (SMA) on daily functioning and participation and the impact of received contracture management. METHODS: We included 14, non-ambulant AYA with SMA types 2/3 (10 females and 4 males), aged 16-30 years. Interviews focused on two topics: perceived impact of contractures on daily functioning and of previous contracture management. We used inductive thematic analysis for interview analysis. RESULTS: In general, participants experienced muscle weakness to be more of a hindrance than contractures; they had adapted to their contractures over time. Participants considered contracture treatment useful when goals were meaningful and realistic. Participants mentioned that their perspective on contracture management would change in light of a promise of improved motor function due to disease-modifying treatment. CONCLUSION: Despite the relatively low impact of contractures in comparison to the loss of muscle strength, non-ambulant AYA with SMA should be informed on the potential impact of contractures and benefits and potential adverse effects of their management. This information can support the shared decision-making process. While respecting individual choices, allows for incorporating interventions into daily life and the promotion of daily functioning and participation when children with SMA are growing up.
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Lansink et al. (2023) studied this question.
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