ArticleTranslational pediatrics2026
Analysis of the knowledge, attitude, and practice status of the primary caregivers of children with spinal muscular atrophy regarding family transitional care-a cross-sectional study.
Article in Translational pediatrics, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
Background: The advent of disease-modifying therapies (DMTs) has revolutionized the management of spinal muscular atrophy (SMA), shifting the paradigm towards chronic disease management. Effective family transitional care is now paramount to maximizing the long-term benefits of these advanced treatments. However, the knowledge, attitude, and practice (KAP) of primary caregivers-the key agents of this care-remain poorly understood, creating a significant barrier to translating therapeutic advances into optimal patient outcomes. This study aimed to assess the KAP status and its influencing factors among primary caregivers of children with SMA in China. The findings are critical to inform the development of targeted support strategies. Methods: A cross-sectional study was conducted from January to March 2025. A convenience sample of 109 primary caregivers of children with SMA from the Children's Hospital of Zhejiang University School of Medicine completed a self-designed KAP questionnaire. Data were analyzed using descriptive statistics, univariate analysis, and multiple linear regression to identify factors associated with KAP levels. Results: The mean scores for the KAP dimensions were 3.49±0.56, 4.42±0.51, and 3.65±0.53, respectively (on a 5-point scale), indicating moderate knowledge and practice levels but relatively positive attitudes. Multivariate analysis revealed that the caregiver's role (e.g., mother), age, gender, education level, annual household income, and place of residence were independent influencing factors of the total KAP score (P<0.05). Notably, caregivers of children receiving gene-targeting therapies and those with more severe disease types exhibited significantly higher KAP scores. Conclusions: While caregivers demonstrate positive attitudes, significant gaps exist in their knowledge and daily care practices for children with SMA, which are linked to socioeconomic and caregiver characteristics. Developing tailored educational programs, providing accessible skills training, and implementing supportive social policies are critical translational steps to empower caregivers and ultimately improve the long-term quality of life for both children with SMA and their families.
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