1型神经纤维瘤病（NF1）：应对从儿科护理到成人护理的转变。
Neurofibromatosis Type 1 (NF1): Addressing the Transition from Pediatric to Adult Care.
作者信息
Radtke Heather B, Berger Angela, Skelton Tammi, Goetsch Weisman Allison
机构信息
Medical College of Wisconsin, Milwaukee, WI, USA.
Children's Tumor Foundation, New York, NY, USA.
出版信息
Pediatric Health Med Ther. 2023 Feb 9;14:19-32. doi: 10.2147/PHMT.S362679. eCollection 2023.
Health care transition, or HCT, is the process of adolescents and young adults moving from a child/family-centered model of health care to an adult/patient-centered model of health care. Healthcare providers have an essential role in this process which can be especially challenging for individuals with medical or special healthcare needs. Neurofibromatosis type 1 (NF1) is a complex multisystem disorder requiring lifelong medical surveillance, education, and psychosocial support. This review highlights the transition needs of NF1 patients and provides resources for both clinicians and families to facilitate HCT in this population. The authors propose a framework for the development of an effective NF1 transition program by using the Six Core Elements model of the Got Transition program, reviewing existing literature, and incorporating author experiences in the care and transition of NF1 patients.
医疗保健过渡（HCT）是指青少年和青年从以儿童/家庭为中心的医疗保健模式转向以成人/患者为中心的医疗保健模式的过程。医疗保健提供者在这一过程中起着至关重要的作用，对于有医疗或特殊医疗需求的个体而言，这一过程可能尤其具有挑战性。1型神经纤维瘤病（NF1）是一种复杂的多系统疾病，需要终身的医疗监测、教育和心理社会支持。本综述强调了NF1患者的过渡需求，并为临床医生和家庭提供资源，以促进这一人群的医疗保健过渡。作者通过运用“顺利过渡计划”的六个核心要素模型、回顾现有文献并纳入作者在NF1患者护理和过渡方面的经验，提出了一个有效NF1过渡计划的开发框架。
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