Department of Psychology, Center for Pediatric Psychology, Oklahoma State University, Stillwater, OK, USA.
Department of Psychology, University of Dayton, Dayton, OH, USA.
Cardiol Young. 2023 Feb;33(2):235-241. doi: 10.1017/S1047951122000488. Epub 2022 Feb 21.
Children with CHD are at risk for psychosocial and neurodevelopmental difficulties, as well as lapses in care during their transition from paediatric to adult CHD providers. The American Heart Association and American Academy of Pediatrics released guidelines for best practices in the neurodevelopmental and transitional care for children with CHD in 2012 and 2011, respectively. CHD providers from 48 (42.1% response rate) geographically diverse cardiac clinics completed a 31-item electronic survey designed to assess the cardiac teams' consistency with neurodevelopmental evaluation and management recommendations, consultation/liaison patterns for psychosocial services, and procedures regarding transitional services for emerging adults. Responses suggest most cardiac teams refer patients to psychosocial services as needed, and 39.6% of teams screen for psychosocial distress. CHD providers at 66.7% of cardiac clinics reported a formal neurodevelopmental programme/clinic. Nearly half of cardiac teams conduct routine neurodevelopmental evaluations, most frequently occurring at 9 months of age. Less than 10% of cardiac clinics have resources to meet the American Heart Association and American Academy of Pediatrics 2012 neurodevelopmental evaluation and management guidelines. Formal paediatric to adult CHD transition programmes were reported at 70.8% of cardiac clinics and were associated with younger ages of transition to adult CHD care. Care practices varied across the 48 represented cardiac clinics, indicating inconsistent practices for patients with CHD. Barriers and facilitators to the provision of care for children in these areas were reported and are presented. More support is needed for cardiac clinics to continue improvements in psychosocial, neurodevelopmental, and transitional care services.
患有先天性心脏病的儿童面临着心理社会和神经发育方面的困难，以及在从儿科过渡到成人先天性心脏病提供者的过程中护理中断的风险。美国心脏协会和美国儿科学会分别在 2012 年和 2011 年发布了先天性心脏病儿童神经发育和过渡护理最佳实践指南。来自 48 个（42.1%的回复率）地理位置不同的心脏诊所的先天性心脏病提供者完成了一项 31 项的电子调查，旨在评估心脏团队在神经发育评估和管理建议、心理社会服务咨询/联络模式以及新兴成年人过渡服务方面的一致性。调查结果表明，大多数心脏团队会根据需要将患者转介给心理社会服务机构，39.6%的团队会对心理困扰进行筛查。66.7%的心脏诊所的先天性心脏病提供者报告了一个正式的神经发育项目/诊所。近一半的心脏团队进行常规的神经发育评估，最常见的是在 9 个月大时进行。不到 10%的心脏诊所拥有满足美国心脏协会和美国儿科学会 2012 年神经发育评估和管理指南的资源。70.8%的心脏诊所报告了正式的儿童到成人先天性心脏病过渡项目，与向成人先天性心脏病护理过渡的年龄较小有关。48 个代表的心脏诊所的护理实践存在差异，表明对患有先天性心脏病的患者的护理实践不一致。报告了在这些领域提供护理的障碍和促进因素，并进行了介绍。需要更多的支持，以帮助心脏诊所继续改善心理社会、神经发育和过渡护理服务。
