J Am Heart Assoc. 2022 Apr 5;11(7):e025278. doi: 10.1161/JAHA.122.025278. Epub 2022 Mar 17.
It is now expected that most individuals with congenital heart disease will survive to adulthood, including those with complex heart conditions. Maintaining lifelong medical care requires those with congenital heart disease to eventually transfer from pediatric to adult-oriented health care systems. Developing health care transition skills and gaining independence in managing one's own health care is imperative to this process and to ongoing medical and psychosocial success. This scientific statement reviews the recent evidence regarding transition and provides resources, components, and suggestions for development of congenital heart disease transition programs with the goals of improving patient knowledge, self-management, and self-efficacy skills to the level they are capable to eventually integrate smoothly into adult-oriented health care. Specifically, the scientific statement updates 3 sections relevant to transition programming. First, there is a review of specific factors to consider, including social determinants of health, psychosocial well-being, and neurocognitive status. The second section reviews costs of inadequate transition including the public health burden and the impairment in individual quality of life. Finally, the last section discusses considerations and suggestions for transition program design including communication platforms, a family-centered approach, and individual models. Although this scientific statement reviews recent literature surrounding transitions of care for individuals with congenital heart disease there remain significant knowledge gaps. As a field, we have yet to determine ideal timing and methods of transition, and barriers to transition and transfer remain, particularly for the underserved populations. The consequences of poor health care transition are great and garnering outcomes and information through organized, multifaceted, collaborative approaches to transition is critical to improving the lifelong care of individuals with congenital heart disease.
现在预计大多数患有先天性心脏病的人都能活到成年，包括那些患有复杂心脏病的人。维持终身医疗需要先天性心脏病患者最终从儿科转向成人导向的医疗保健系统。发展医疗保健过渡技能并在管理自己的医疗保健方面获得独立性，对于这一过程以及持续的医疗和心理社会成功至关重要。本科学声明审查了有关过渡的最新证据，并提供了资源、组成部分和建议，以制定先天性心脏病过渡计划，目标是提高患者的知识、自我管理和自我效能技能，使其能够最终顺利融入成人导向的医疗保健。具体来说，科学声明更新了与过渡计划相关的 3 个部分。首先，回顾了需要考虑的具体因素，包括健康的社会决定因素、心理健康和神经认知状态。第二节审查了过渡不足的成本，包括公共卫生负担和个人生活质量受损。最后，最后一节讨论了过渡计划设计的注意事项和建议，包括沟通平台、以家庭为中心的方法和个人模式。尽管本科学声明审查了围绕先天性心脏病患者护理过渡的最新文献，但仍存在重大知识差距。作为一个领域，我们尚未确定过渡的理想时机和方法，过渡和转移的障碍仍然存在，特别是对于服务不足的人群。医疗保健过渡不良的后果是巨大的，通过有组织、多方面、协作的过渡方法来获取结果和信息对于改善先天性心脏病患者的终身护理至关重要。
