Rehabilitation practices for childhood spinal muscular atrophy
Bibliographic record
Abstract
PURPOSE: Spinal muscular atrophy (SMA) is a neuromuscular condition characterized by muscle weakness and impaired motor function. The introduction of disease modifying treatments, such as gene therapy, have significantly improved prognosis. Children with SMA now have the potential for active rehabilitation, but limited evidence exists to guide rehabilitation professionals and families. Our objective was to explore and describe how rehabilitation therapists are approaching this changing landscape, including the challenges and opportunities. METHODS: We conducted a qualitative study using a demographic survey and three focus groups with 10 occupational and physical therapists from across Canada. Participants shared their experiences navigating the changing landscape of SMA rehabilitation. RESULTS: Reflexive thematic analysis was used to analyze the transcripts and generate four main themes: (1) Managing Expectations; (2) New Possibilities; (3) Centering the Child; (4) Navigating a Changing Landscape. CONCLUSION: This study highlighted challenges and benefits in providing rehabilitation amidst the changing SMA landscape. Updated practice guidelines and effective knowledge dissemination are needed to guide therapists, alongside prioritization of psychosocial support for families and children coping with high expectations. What we learned about therapists' experiences may help inform others on how to adapt rehabilitation when disease modifying treatment options become available for other conditions.
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How this classification was reachedexpand
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.001 | 0.009 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.000 | 0.001 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.000 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one teacher head, not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".