目标:患有复杂疾病的儿童存活到成年的数量正在增加。计划向成人护理系统的过渡对于这些患者的健康维护至关重要。已经为从青春期到成年的一般医疗保健过渡(HCT)建立了指导。以前没有对小儿神经外科医生在HCT中的表现进行过正式评估。目前在小儿神经外科中不存在此过程的“最佳实践”。作者在本文中追求两个目标:1)通过对美国小儿神经外科医师学会(ASPN)会员对HCT当前方法的调查,确定HCT在小儿神经外科中的现状,和2)制定领导认可的HCT从儿科到成人神经外科保健的最佳实践指南。
方法:通过使用基于网络的问卷来捕获ASPN成员的HCT实践,要求178名北美儿科神经外科医生完成当前医疗保健过渡活动评估调查。作者同时对有特殊医疗保健需求的年轻人进行了基于PubMed/MEDLINE的HCT文献综述。手术条件,和/或1990年至2018年期间的神经系统疾病。选定的文章由主题专家和ASPN质量成员汇编和审查,安全,和宣传委员会。制定了最佳做法建议,并由外部专家组进行同行审查。
结果:收到了76份调查回复(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上记录了1分(最低得分),几乎70%的过渡跟踪,85%的过渡准备,在过渡计划和护理转移方面至少占40%,过渡完成后下降53%。在建立的4分制上,所有核心要素的平均响应均<2。ASPN领导制定并认可了七项最佳做法建议。
结论:大多数小儿神经外科医生的过渡实践很差,不能满足患者和家庭的需求,并且应该改进。结构化的过渡方法,当地与成人神经外科提供者的接触,建议儿科和成人神经外科组织之间的国家合作伙伴关系,以解决儿科神经外科医生服务的HCT患者的当前差距。
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.