Lanzkron Sophie, Sawicki Gregory S, Hassell Kathryn L, Konstan Michael W, Liem Robert I, McColley Susanna A
Department of Medicine, Johns Hopkins School of Medicine, Baltimore, MD, USA.
Department of Pediatrics, Harvard Medical School, Boston, MA, USA.
J Clin Transl Sci. 2018 Oct;2(5):334-342. doi: 10.1017/cts.2018.338.
A growing population of adults living with severe, chronic childhood-onset health conditions has created a need for specialized health care delivered by providers who have expertise both in adult medicine and in those conditions. Optimal care of these patients requires systematic approaches to healthcare transition (HCT). Guidelines for HCT exist, but gaps in care occur, and there are limited data on outcomes of HCT processes.
The Single Disease Workgroup of the Lifespan Domain Task Force of the National Center for Advancing Translational Sciences Clinical and Translational Science Award programs convened a group to review the current state of HCT and to identify gaps in research and practice. Using cystic fibrosis and sickle cell disease as models, key themes were developed. A literature search identified general and disease-specific articles. We summarized key findings.
We identified literature characterizing patient, parent and healthcare provider perspectives, recommendations for transition care, and barriers to effective transition.
With increased survival of patients with severe childhood onset diseases, ongoing study of effective transition practices is essential as survival increases for severe childhood onset diseases. We propose pragmatic methods to enhance transition research to improve health and key outcomes.
患有严重慢性儿童期起病健康状况的成年人口不断增加，这就需要由具备成人医学及这些病症专业知识的医疗服务提供者提供专门的医疗保健。对这些患者进行最佳护理需要系统的医疗保健过渡（HCT）方法。虽然存在HCT指南，但护理仍存在差距，且关于HCT过程结果的数据有限。
美国国立转化医学推进中心临床与转化科学奖项目寿命领域特别工作组的单一疾病工作组召集了一个小组，以审查HCT的现状，并确定研究和实践中的差距。以囊性纤维化和镰状细胞病为模型，确定了关键主题。通过文献检索确定了一般性和特定疾病的文章。我们总结了主要发现。
我们确定了描述患者、家长和医疗服务提供者观点、过渡护理建议以及有效过渡障碍的文献。
随着严重儿童期起病疾病患者生存率的提高，随着严重儿童期起病疾病患者生存率的增加，持续研究有效的过渡实践至关重要。我们提出了务实的方法来加强过渡研究，以改善健康状况和关键结果。
