Cristina Isabel Díaz-López, Rocío Palomo-Carrión, María Coello-Villalón, Maribel Ródenas-Martínez, Soraya Pacheco-da-Costa, Helena Romay-Barrero, Purificación López-Muñoz
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引用次数: 0
摘要
本研究考察了使用改良的玩具车进行早期动力运动训练对1型脊髓性肌萎缩症儿童(SMA I)的影响。在西班牙对16名10个月至5岁的儿童进行了一项随机、候补对照、单盲试验。干预包括在自然环境中进行12周的动力活动训练,随后进行4周的随访。主要结局包括参与(YC-PEM)、功能能力(PEDI-CAT)和生活质量(PedsQL-NM),在五个时间点进行评估。父母压力(PSI-SF)是次要结果。从第4周开始,实验组儿童在日常活动和流动性方面表现出临床意义上的改善(z = 0.41-0.72; g = 0.29-0.53),而社交/认知方面的改善在第8-16周超过SEMm。生活质量在第4周出现显著差异(p = 0.03; g = 0.93),尽管低于SEMm阈值。在家庭参与中观察到适度的增长,而期望的变化保持稳定。在第4周、第8周和第16周,父母压力的减少达到了统计学意义(p < 0.05),尽管在SEMm范围内。研究结果支持早期动力移动作为一种辅助技术,可以增强SMA患者的功能独立性。补充的社会心理和环境支持可以最大限度地扩大参与和提高生活质量。
The impact of early powered mobility training in families and children with Spinal Muscular Atrophy Type I.
This study examined the effects of early powered mobility training using modified ride-on toy cars in young children with Spinal Muscular Atrophy type I (SMA I). A randomized, waitlist-controlled, single-blinded trial was conducted in Spain with 16 children aged 10 months to 5 years. The intervention consisted of 12 weeks of powered mobility training in natural environments, followed by 4 weeks of follow-up. Primary outcomes included participation (YC-PEM), functional ability (PEDI-CAT), and quality of life (PedsQL-NM), assessed at five time points. Parental stress (PSI-SF) was a secondary outcome. Children in the experimental group demonstrated clinically meaningful gains in Daily Activities and Mobility from week 4 onward (z = 0.41-0.72; g = 0.29-0.53), while Social/Cognitive improvements exceeded SEMm by weeks 8-16. Quality of life showed significant differences at week 4 (p = 0.03; g = 0.93), though below the SEMm threshold. Modest increases were observed in home participation, while Desired Change remained stable. Parental stress reductions reached statistical significance at weeks 4, 8, and 16 (p < 0.05), though within SEMm margins. Findings support early powered mobility as an assistive technology that enhances functional independence in SMA I. Complementary psychosocial and environmental supports may maximize broader participation and quality-of-life outcomes.
期刊介绍:
Assistive Technology is an applied, scientific publication in the multi-disciplinary field of technology for people with disabilities. The journal"s purpose is to foster communication among individuals working in all aspects of the assistive technology arena including researchers, developers, clinicians, educators and consumers. The journal will consider papers from all assistive technology applications. Only original papers will be accepted. Technical notes describing preliminary techniques, procedures, or findings of original scientific research may also be submitted. Letters to the Editor are welcome. Books for review may be sent to authors or publisher.