RESUMO
BACKGROUND: Children with congenital heart disease (CHD) often have inactive lifestyles and motor skill deficits beginning in infancy. The least active infants continue to be the least active children at school age. Enhancing physical activity and motor development in infancy, at the time of CHD treatment, may prevent inactive lifestyle habits. METHODS: All children being treated, through surgery or catheterization, for congenital heart disease are eligible if they are 3 to 72 months of age at enrollment. The Peabody Motor Development Scales (Version 2) and 7-day accelerometry (Actigraph GT9X Link) assess motor skills and physical activity prior to treatment and 7 weeks, 6 months and 12 months post-treatment. Participants are randomized 3:1 to intervention:control. Until 7 weeks post-treatment, intervention activities focus on regaining pre-treatment mobility and midline crossing. From 7 weeks to 6 months post-treatment, the intervention is individualized to each child's assessment results and is parent-led, delivered at home and play-based. CONCLUSION: This feasibility study will provide essential data for a randomized controlled trial to evaluate play-based, parent-delivered interventions optimized to support age-appropriate physical activity and motor skills among young children with CHD. Preliminary intervention efficacy data will inform an evidence-based sample size calculation, optimize intervention timing, and identify hypotheses on the motor skill-physical activity connection and the impact of play-based, parent-led interventions during recovery from CHD treatment. Long-term, the goal is to optimize motor skill and active lifestyles among young children with CHD, enabling their healthy growth and development and enhancing childhood quality of life. TRIAL REGISTRATION: Clinical trials registration: NCT04619745.
