Evaluating a developmental risk screening service for babies and young children with congenital heart disease following cardiac surgery

Background Some children with congenital heart disease (CHD) are at risk of poorer neuro-developmental outcomes. Developmental delays are often subtle requiring formal evaluation using valid, reliable, and responsive assessments to identify those children with congenital heart disease at risk. Objectives This was a service improvement activity that aimed to assess the feasibility of screening children with CHD within current resources, establish the number of infants and young children with CHD over a 12-month period identified with gross motor delay and requiring ongoing physiotherapy intervention, and developing a care pathway to assess and triage for physiotherapy intervention within current available resources. Methods This was a health service implementation project. A care-pathway designed to identify, assess, and triage to treatment children with CHD and at risk of developmental delays was developed by nursing and physiotherapy and trialed for a 12-month period. Outcomes included identification of children at risk using validated screening assessments, and the feasibility to implement the care pathway within current resources. Results The care-pathway was able to be implemented effectively. Eight nine children were eligible for screening for risk of development concerns. Of those 69 (88 %) accepted and attended appointments. Fifty-two percent of the children screened required ongoing physiotherapy input. Conclusion More than half the children screened required follow-up, confirming the need for the care pathway. The care pathway was efficient enabling the service to be implemented with current resources. Establishing pathway processes to engage families who declined or did not attend a screening assessment is required.