SWORD - South West Open Research Deposit - International Symposium of Adapted Physical Activity and International Symposium on Physical Activity and Visual Impairment and Deafblindness: Evaluating the level of assistance needed for daily activities in children with spinal muscular atrophy
 

Start Date

17-6-2025 12:30 PM

End Date

17-6-2025 2:00 PM

Abstract

Objective

Evaluating daily assistance needs in children with spinal muscular atrophy (SMA) is essential to deliver individualized, adaptive care that promotes independence, supports caregivers, and enhances overall well-being. This study aimed to assess the degree of assistance required to perform typical daily activities in pediatric patients with SMA.

Methods

The data used in this study were obtained via a web-based cross-sectional survey. Parents of pediatric patients with SMA completed the proxy-reported SMAIS. Information about socioeconomic and health status was also obtained. Chi-squared test, ANOVA, and linear regression analysis was used to do the data analysis.

Results

A total of 842 parents of pediatric SMA children completed the survey and provided valid responses. Of these children, 460 (54.6%) were male, with a mean age of 8.5 years. The SMAIS score ranges from 0 to 24, with a lower score indicating better self-care ability. The mean SMAIS score was 7.3. Female patients showed a higher mean SMAIS score than males (7.95 vs. 6.74, p = 0.02). Patients who visit hospitals regularly reported a significantly higher SMAIS score than those who don't (8.38 vs. 6.83, p = 0.002). A regression model demonstrated that older pediatric patients showed higher SMAIS scores than their younger counterparts (Beta = 0.182, p = 0.02).

Conclusion

This study showed that pediatric patients with SMA required less assistance in performing daily activities, according to their parents' perspectives. However, as these patients aged, their self-care ability decreased significantly, indicating a need for more support at the community and social levels.

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Jun 17th, 12:30 PM Jun 17th, 2:00 PM

Evaluating the level of assistance needed for daily activities in children with spinal muscular atrophy

Objective

Evaluating daily assistance needs in children with spinal muscular atrophy (SMA) is essential to deliver individualized, adaptive care that promotes independence, supports caregivers, and enhances overall well-being. This study aimed to assess the degree of assistance required to perform typical daily activities in pediatric patients with SMA.

Methods

The data used in this study were obtained via a web-based cross-sectional survey. Parents of pediatric patients with SMA completed the proxy-reported SMAIS. Information about socioeconomic and health status was also obtained. Chi-squared test, ANOVA, and linear regression analysis was used to do the data analysis.

Results

A total of 842 parents of pediatric SMA children completed the survey and provided valid responses. Of these children, 460 (54.6%) were male, with a mean age of 8.5 years. The SMAIS score ranges from 0 to 24, with a lower score indicating better self-care ability. The mean SMAIS score was 7.3. Female patients showed a higher mean SMAIS score than males (7.95 vs. 6.74, p = 0.02). Patients who visit hospitals regularly reported a significantly higher SMAIS score than those who don't (8.38 vs. 6.83, p = 0.002). A regression model demonstrated that older pediatric patients showed higher SMAIS scores than their younger counterparts (Beta = 0.182, p = 0.02).

Conclusion

This study showed that pediatric patients with SMA required less assistance in performing daily activities, according to their parents' perspectives. However, as these patients aged, their self-care ability decreased significantly, indicating a need for more support at the community and social levels.