Rocque Brandon G, Weprin Bradley E, Blount Jeffrey P, Hopson Betsy D, Drake James M, Hamilton Mark G, Williams Michael A, White Patience H, Orrico Katie O, Martin Jonathan E
1Department of Neurosurgery, University of Alabama at Birmingham, Children's of Alabama, Birmingham, Alabama.
2Department of Pediatric Neurosurgery, University of Texas Southwestern Medical Center, Dallas, Texas.
J Neurosurg Pediatr. 2020 Feb 14;25(5):555-563. doi: 10.3171/2019.12.PEDS19524. Print 2020 May 1.
The number of children with complex medical conditions surviving to adulthood is increasing. A planned transition to adult care systems is essential to the health maintenance of these patients. Guidance has been established for the general health care transition (HCT) from adolescence to adulthood. No formal assessment of the performance of pediatric neurosurgeons in HCT has been previously performed. No "best practice" for this process in pediatric neurosurgery currently exists. The authors pursued two goals in this paper: 1) define the current state of HCT in pediatric neurosurgery through a survey of the membership of the American Society of Pediatric Neurosurgeons (ASPN) on current methods of HCT, and 2) develop leadership-endorsed best-practice guidelines for HCT from pediatric to adult neurosurgical health care.
Completion of the Current Assessment of Health Care Transition Activities survey was requested of 178 North American pediatric neurosurgeons by using a web-based questionnaire to capture HCT practices of the ASPN membership. The authors concurrently conducted a PubMed/MEDLINE-based literature review of HCT for young adults with special health care needs, surgical conditions, and/or neurological conditions for the period from 1990 to 2018. Selected articles were assembled and reviewed by subject matter experts and members of the ASPN Quality, Safety, and Advocacy Committee. Best-practice recommendations were developed and subjected to peer review by external expert groups.
Seventy-six responses to the survey (43%) were received, and 62 respondents (82%) answered all 12 questions. Scores of 1 (lowest possible score) were recorded by nearly 60% of respondents on transition policy, by almost 70% on transition tracking, by 85% on transition readiness, by at least 40% on transition planning as well as transfer of care, and by 53% on transition completion. Average responses on all core elements were < 2 on the established 4-point scale. Seven best-practice recommendations were developed and endorsed by the ASPN leadership.
The majority of pediatric neurosurgeons have transition practices that are poor, do not meet the needs of patients and families, and should be improved. A structured approach to transition, local engagement with adult neurosurgical providers, and national partnerships between pediatric and adult neurosurgery organizations are suggested to address current gaps in HCT for patients served by pediatric neurosurgeons.
患有复杂病症的儿童存活至成年的数量正在增加。向成人护理系统进行有计划的过渡对于这些患者的健康维持至关重要。已为从青春期到成年期的一般医疗保健过渡（HCT）制定了指导方针。此前尚未对儿科神经外科医生在HCT方面的表现进行正式评估。目前在儿科神经外科领域，针对这一过程不存在“最佳实践”。本文作者追求两个目标：1）通过对美国儿科神经外科医生协会（ASPN）成员关于当前HCT方法的调查，界定儿科神经外科领域HCT的现状；2）制定由领导层认可的从儿科到成人神经外科医疗保健的HCT最佳实践指南。
通过基于网络的问卷，要求178名北美儿科神经外科医生完成“医疗保健过渡活动当前评估”调查，以获取ASPN成员的HCT实践情况。作者同时对1990年至2018年期间针对有特殊医疗保健需求、外科病症和/或神经病症的青年成人的HCT进行了基于PubMed/MEDLINE的文献综述。选定的文章由主题专家以及ASPN质量、安全和倡导委员会成员进行汇总和评审。制定了最佳实践建议，并由外部专家组进行同行评审。
共收到76份对调查的回复（43%），62名受访者（82%）回答了所有12个问题。近60%的受访者在过渡政策方面的得分是1分（可能的最低分），近70%在过渡跟踪方面、85%在过渡准备方面、至少40%在过渡规划以及护理交接方面，还有53%在过渡完成方面的得分都是1分。在既定的4分制量表上，所有核心要素的平均得分均小于2分。制定了7条最佳实践建议并得到了ASPN领导层的认可。
大多数儿科神经外科医生的过渡实践情况不佳，无法满足患者及其家庭的需求，应当加以改进。建议采用结构化的过渡方法，与成人神经外科提供者进行本地合作，并在儿科和成人神经外科组织之间建立全国性伙伴关系，以弥补儿科神经外科医生所服务患者在HCT方面当前存在的差距。
