Optimising gross motor outcomes for children with single ventricle CHD using a collaborative learning health network

Infants with single ventricle CHD commonly experience gross motor delays due to physiological and environmental factors, including increased risk for white matter injury, reduced aerobic capacity, restrictive post-operative protocols, and limited movement opportunities. These delays persist in adolescence, affecting physical and social development. This study examines a quality improvement initiative within the National Pediatric Cardiology Quality Improvement Collaborative to enhance gross motor development.

Fifteen centres participated. Gross motor skills were assessed using the Ages and Stages Questionnaires, Third Edition, at 6 and 12 months. A key driver diagram, Plan-Do-Study-Act cycles, baseline data, and ongoing process measures were collected. Interventions were implemented, including education, therapy support, and mobilisation protocols. Control charts were used to evaluate the data.

Scores from the Ages and Stages Questionnaires indicated delays in gross motor skills at baseline, with improvement over time. Participating centres showed a centerline shift from 41% to 89% of infants achieving on-target or improved motor scores, compared with 54% to 68% of infants at non-participating centres. Establishment of customised infant developmental plans increased from 62% to 74% for participating centres and from 53% to 61% for non-participating centres. Interventions included establishing processes for consistent screening, developmental plan administration, review of prone positioning, access to therapies, and early intervention referrals.

This targeted quality improvement project increased the use of inpatient practices to support gross motor development for infants with single ventricle CHD. Collaborative, interdisciplinary efforts remain critical for addressing neurodevelopmental challenges in this high-risk population.