Palomo-Carrión Rocío, López-Muñoz Purificación, Longo Egmar, Romay-Barrero Helena, Ródenas-Martínez Maribel, Plasencia-Robledo María, de Andrés-Beltrán Beatriz, Coello-Villalón María, Díaz-López Cristina, Pacheco-da-Costa Soraya
Department of Nursing, Physiotherapy and Occupational Therapy, Faculty of Physiotherapy and Nursing, Universidad de Castilla-La Mancha, Avda. Carlos III, s/n, 45071 Toledo, Spain.
Department of Physical Therapy, Federal University of Paraiba, João Pessoa 58051-900, Brazil.
J Clin Med. 2024 Aug 18;13(16):4875. doi: 10.3390/jcm13164875.
: 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. : 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). : 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. : Early powered mobility could increase the opportunities for children with SMA1 to learn to move independently and participate in their natural environment.
1型脊髓性肌萎缩症（SMA1）幼儿的独立活动能力和参与度有限，这可能导致认知发育迟缓。在干预措施中实施早期动力移动训练可能有助于他们学习自主运动、玩耍并愉快地参与自然环境。本研究的目的是评估早期动力移动训练干预对提高SMA1幼儿的参与度、功能能力和生活质量的有效性。AMEsobreRuedas是一项随机等待列表对照临床试验。将24名儿童（10个月至5岁，患有SMA1）随机分为两组。实验组将在自然环境中进行为期16周的以家庭为中心的动力移动训练干预：每周三次，为期12周的结构化训练；以及为期4周的自由使用动力移动设备的随访。对照组（等待列表）将保持常规状态，并在实验组之后接受相同的干预。将在基线以及第4、8、12和16周进行五次评估。主要结果包括参与度（YC-PEM）；功能能力（PEDI-CAT）；以及生活质量（PedsQL-神经肌肉模块）。预计本研究将提供有关动力移动训练对所分析变量的积极影响的更多知识。此外，家庭参与干预和设定功能目标可能有助于在未来研究中提供有关实际需求的宝贵信息。早期动力移动训练可以增加SMA1儿童独立学习移动并参与自然环境的机会。
