167 - Facilitators and Barriers of Neurodevelopmental Follow-Up of Children with Congenital Heart Disease

Poster Number: 167
Publication Number: 167.101

Gautam Dagur, The University of Queensland-Ochsner Clinical School, Hicksville, NY, United States; Jake Kleinmahon, Ochsner Hospital for Children, New Orleans, LA, United States; Michelle Gurvitz, Boston Children's Hospital, Boston, MA, United States; Rebeka Acosta, On behalf of Conquering CHD, Henderson, NV, United States; Samudragupta Bora, Mater Research Institute, Faculty of Medicine, The University of Queensland, South Brisbane, Queensland, Australia

Background: The risk of adverse neurodevelopment in children with congenital heart disease (CHD) is well recognized. Periodic surveillance is necessary for timely identification of delays/deficits and targeted interventions to improve outcomes.

Objective: 1) Identify facilitators and barriers of clinical neurodevelopmental follow-up, reported by primary caregivers of children with CHD; 2) identify barriers of digital health technology (DHT) utilization for neurodevelopmental follow-up.

Design/Methods: Sample comprised 472 primary caregivers of children with CHD in the U.S. who completed an online survey between November 2020 and January 2021. Recruitment was facilitated by Conquering CHD, the largest national CHD patient and family advocacy organization. Sample characteristics are shown in Table 1. Responses were stratified into three themes corresponding to healthcare systems, health care professionals, and primary caregivers.

Results: Facilitators of neurodevelopmental follow-up were reported by 263 and barriers by 402 caregivers. For DHT, barriers were reported by 323 caregivers. The largest facilitators of neurodevelopmental follow-up attendance were caregivers’ perceived benefits on outcomes (72%), their understanding of importance of follow-up (59%), and health care professionals’ clarity of communication (51%). The largest barriers were health care professionals’ lack of clarity of communication regarding importance of neurodevelopmental follow-up (52%), difficulty scheduling an appointment (39%), and primary caregivers’ lack of understanding the importance of neurodevelopmental follow-up (35%). Further, Figure 1 shows barriers across subgroups stratified by follow-up attendance, child clinical risk, and maternal social risk. Leading barriers of DHT utilization were lack of bond with health care professionals (47%), difficulty of neurodevelopmental monitoring (38%), and non-promotion of DHT by health care professionals (20%). Further, Figure 2 shows the barriers stratified by child clinical and maternal social risks.Conclusion(s): Findings highlight the importance of a multifactorial approach to improve the uptake of clinical neurodevelopmental follow-up and successful implementation of DHT in the CHD population. Interventions addressing health care professionals’ communication and increasing primary caregivers’ awareness of the importance of neurodevelopmental follow-up need to be prioritized.
Curriculum Vitae - Gautam DagurCurriculum Vitae - Gautam Dagur.pdf
Figure 1. Barriers of clinical neurodevelopmental follow-up for children with congenital heart disease, Nf402.