Division of Neuropsychology, Children's National Hospital, Departments of Psychiatry and Behavioral Sciences & Pediatrics, George Washington University School of Medicine, Washington, DC, USA.
Division of Developmental and Behavioral Pediatrics, Cincinnati Children's Hospital Medical Center and Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, Ohio, USA.
Cardiol Young. 2021 Jun;31(6):876-887. doi: 10.1017/S1047951121002146. Epub 2021 Jun 4.
The Neurodevelopmental and Psychological Outcomes Working Group of the Cardiac Neurodevelopmental Outcome Collaborative was formed in 2018 through support from an R13 grant from the National Heart, Lung, and Blood Institute with the goals of identifying knowledge gaps regarding the neurodevelopmental and psychological outcomes of individuals with CHD and investigations needed to advance science, policy, clinical care, and patient/family outcomes. Accurate characterisation of neurodevelopmental and psychological outcomes in children with CHD will drive improvements in patient and family outcomes through targeted intervention. Decades of research have produced a generalised perspective about neurodevelopmental and psychological outcomes in this heterogeneous population. Future investigations need to shift towards improving methods, measurement, and analyses of outcomes to better inform early identification, prevention, and intervention. Improved definition of underlying developmental, neuropsychological, and social-emotional constructs is needed, with an emphasis on symptom networks and dimensions. Identification of clinically meaningful outcomes that are most important to key stakeholders, including patients, families, schools and providers, is essential, specifically how and which neurodevelopmental differences across the developmental trajectory impact stakeholders. A better understanding of the discontinuity and patterns of neurodevelopment across the lifespan is critical as well, with some areas being more impactful at some ages than others. Finally, the field needs to account for the impact of race/ethnicity, socio-economic status, cultural and linguistic diversity on our measurement, interpretation of data, and approach to intervention and how to improve generalisability to the larger worldwide population of patients and families living with CHD.
心脏神经发育结局协作组的神经发育和心理结局工作组于 2018 年成立，得到了美国国立心肺血液研究所 R13 资助的支持，旨在确定有关 CHD 个体神经发育和心理结局的知识空白，并开展必要的研究以推动科学、政策、临床护理和患者/家庭结局的发展。准确描述 CHD 儿童的神经发育和心理结局将通过针对性干预来改善患者和家庭的结局。数十年来的研究为这一异质性人群的神经发育和心理结局提供了一个普遍的视角。未来的研究需要转向改进方法、测量和结果分析，以更好地为早期识别、预防和干预提供信息。需要更好地定义潜在的发育、神经心理学和社会情感结构，重点关注症状网络和维度。确定对关键利益相关者（包括患者、家庭、学校和提供者）最重要的临床相关结局至关重要，具体是了解跨发育轨迹的哪些神经发育差异会对利益相关者产生影响，以及这些差异是如何产生的。同样重要的是更好地了解整个生命周期的神经发育的不连续性和模式，某些领域在某些年龄段比其他年龄段更具影响力。最后，该领域需要考虑种族/民族、社会经济地位、文化和语言多样性对我们的测量、数据解释以及干预方法的影响，以及如何提高对全球范围内患有 CHD 的患者和家庭的普遍性。
