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AMEsobreRuedas Early Powered Mobility in Children with Spinal Muscular Atrophy Type I: Protocol of a Randomized
Rocío Palomo-Carrión1, Purificación López-Muñoz1, Egmar Longo2
1Department of Nursing, Physiotherapy and Occupational Therapy, Faculty of Physiotherapy and Nursing, Universidad de Castilla-La Mancha, Avda. Carlos III, s/n, 45071 Toledo, Spain.
Insights
Early powered mobility interventions can significantly improve participation, functional ability, and quality of life for young children with spinal muscular atrophy type 1 (SMA1), fostering independent movement and engagement.
Area of Science:
- Pediatrics
- Rehabilitation Medicine
- Neuromuscular Disorders
Background:
- Young children with spinal muscular atrophy type 1 (SMA1) experience limited mobility and participation, potentially impacting cognitive development.
- Early intervention with powered mobility devices may facilitate self-initiated movement, play, and participation in natural environments.
- Understanding the benefits of early powered mobility is crucial for optimizing developmental outcomes in children with SMA1.
Purpose of the Study:
- To evaluate the effectiveness of an early powered mobility intervention in improving participation, functional ability, and quality of life for young children diagnosed with SMA1.
- To assess the impact of a family-centered, powered mobility intervention delivered within the child's natural environment.
- To gather data on the feasibility and outcomes of powered mobility for children with SMA1.
Main Methods:
- A randomized waiting list controlled trial (AMEsobreRuedas) involving 24 children (10 months-5 years) with SMA1.
- Children were allocated to an experimental group receiving 16 weeks of powered mobility intervention or a control group (waiting list).
- Assessments of participation (YC-PEM), functional ability (PEDI-CAT), and quality of life (PedsQL-Neuromuscular module) were conducted at baseline and at 4, 8, 12, and 16 weeks.
Main Results:
- Anticipated positive impacts of powered mobility on participation, functional ability, and quality of life in children with SMA1.
- Expected insights into the role of family engagement and functional goal setting in powered mobility interventions.
- Potential for the study to inform future research on the needs of children with SMA1.
Conclusions:
- Early adoption of powered mobility can enhance opportunities for independent movement in children with SMA1.
- Powered mobility interventions may significantly improve participation in natural environments for children with SMA1.
- This intervention holds promise for increasing independence and engagement for young children with SMA1.
Abstract:
Background: Young children with spinal muscular atrophy type 1 (SMA1) have limited independent mobility and participation that may lead to cognitive development delays. Implementing early powered mobility in interventions may help them to learn self-initiated movement, play, and having fun to participate in natural settings. The aim of this study is to evaluate the effectiveness of an early power mobility intervention for increasing participation, functional ability, and quality of life in young children with SMA1. Methods: AMEsobreRuedas is a randomized waiting list controlled clinical trial. A sample of 24 children (10 months-5 years old, with SMA1) will be randomly allocated to two groups. The experimental group will perform a family-centered intervention with powered mobility for 16 weeks in their natural environment: a 12-week-structured program three times a week; and a 4-week follow-up with free use of the powered mobility device. The control group (waiting list) will keep their routine and will receive the same intervention after the experimental group. Five assessments will be carried out at baseline and weeks 4, 8, 12, and 16. Primary outcomes are participation (YC-PEM); functional ability (PEDI-CAT); and quality of life (PedsQL-Neuromuscular module). Results: It is expected that this study will provide further knowledge about the positive impact of powered mobility for the analyzed variables. Moreover, family engagement in the intervention and establishment of functional goals may help to add valuable information about real needs in future research. Conclusions: Early powered mobility could increase the opportunities for children with SMA1 to learn to move independently and participate in their natural environment.
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