Impacts of an Interdisciplinary Developmental Follow-Up Program on Neurodevelopment in Congenital Heart Disease: The CINC Study

Abstract

Objectives: This study investigates the impact of an early systematic interdisciplinary developmental follow-up and individualized intervention program on the neurodevelopment of children with complex congenital heart disease (CHD) who required cardiac surgery. Study Design: We prospectively enrolled 80 children with CHD: 41 were already followed at our neurocardiac developmental follow-up clinic from the age of 4 months, while 39 were born before the establishment of the program and therefore received standard health care. We conducted cognitive, motor, and behavioral assessments at 3 years of age. We used one-way multivariate analyses of variance to compare the neurodevelopmental outcome of both groups. Results: Between-group analyses revealed a distinct neurodevelopmental profile with clinically significant effect size ( P < 0.001, partial η 2 = 0.366). Children followed at our clinic demonstrated better receptive language performances ( P = 0.048) and tended to show higher scores on visuo-constructive tasks ( P = 0.080). Children who received standard health care exhibited greater performances in working memory tasks ( P = 0.032). We found no group differences on global intellectual functioning, gross and fine motor skills, and behaviors. Referral rates for specific remedial services were higher in patients followed at our neurocardiac clinic compared to the historical cohort ( P < 0.005). Conclusions: Overall, the impact of the developmental follow-up and individualized intervention program on neurodevelopmental outcomes remains subtle. Nevertheless, results, although limited by several factors, point toward an advantage for the children who took part in the program regarding receptive language skills over children who received standard health care. We hypothesize that group differences may be greater with growing age. Further research involving larger cohorts is needed to clearly assess the effectiveness of neurocardiac developmental follow-up programs at school age.

Canadian Developmental Follow-up Practices in Children With Congenital Heart Defects: A National Environmental Scan

“…The AHA 2012 statement has been instrumental in raising awareness of the complex structure and process that need to be put in place for the optimal monitoring of children with CHD and is regarded as the "gold standard" in various countries. 4,8,9 However, it remains unclear the extent to which these recommendations were implemented outside the United States and whether their implementation is feasible in other contexts. In countries with publicly funded health care systems, such as Canada, the absence of the medical home structure, on which the recommendations were based, may present a barrier to their implementation.…”

Perioperative Course and Socioeconomic Status Predict Long-Term Neurodevelopment Better Than Perioperative Conventional Neuroimaging in Children with Congenital Heart Disease

“…84,85 Third, families should be supported by an interdisciplinary team of professionals in adherence to cardiological and neurodevelopmental followup appointments. 86 Surveillance of eligible patients during hospital stay by developmental team and educating parents about the need for follow-up visits results in significantly higher followup rates. 87 Before hospital discharge, socioeconomic barriers to these screenings need to be identified.…”

Paediatric cardiologist adherence to American Heart Association neurodevelopmental recommendations for CHD patients

“…These programmes have the potential to positively impact the patients and families participating in them. 8 In a study on the risk and prevalence of developmental issues in children with CHD, many of the delays found in the sample were subtle and others only emerged over time. 9 Thus, it would have been difficult to detect these problems if formal evaluation with regular follow-ups did not take place, highlighting the importance of these clinics and longitudinal developmental evaluation.…”