Parental perspectives on neurodevelopmental risk communication and care coordination in congenital heart disease: a nationwide survey in France.

UNLABELLED: Neurodevelopmental disorders are a major non-cardiac source of morbidity in congenital heart disease (CHD), but families' experiences of risk communication and developmental care remain insufficiently described. We aimed to characterize parental perspectives on neurodevelopmental risk communication, referral, care coordination, and unmet needs in France. We conducted a nationwide, anonymous, cross-sectional online survey of parents of children with CHD in France between May and June 2025. The questionnaire, co-developed with expert parents and a national patient organization, assessed timing and modalities of risk communication, access to follow-up pathways, coordination, and family impact. Of 667 invited families, 293 completed the survey (response rate 43.9%). Among 293 respondents, 184 (62.8%) reported a prenatal CHD diagnosis and 189 (64.5%) reported critical CHD. Overall, 165 parents (56.3%) felt they had not been informed about neurodevelopmental risk. Of 127 parents informed by health professionals, 83% received no written materials or practical guidance and 45% reported no referral to professionals or support services. Almost all respondents (290/293, 99.0%) wanted information about neurodevelopmental risk. Among children older than 3 years, parents reported neurodevelopmental delay or disorder in 120 of 210 cases (57.1%), yet only 11 of these children (9.2%) were enrolled in a multidisciplinary perinatal healthcare network. Three quarters of parents reported no identified coordinator for developmental care.

CONCLUSION

Parents described substantial gaps in neurodevelopmental risk communication, care coordination, and continuity of follow-up for children with CHD. Structured, family-centered pathways should begin at diagnosis and extend into school age.

WHAT IS KNOWN: • Children with congenital heart disease are at increased neurodevelopmental risk, and expert guidance recommends surveillance, referral, and coordinated follow-up.

WHAT IS NEW: • This nationwide parent survey identifies major gaps in risk communication, referral, and coordination, supporting staged counselling and longitudinal developmental pathways into school age.