Department of Pediatric Neurology, Necker Enfants Malades Hospital, Imagine Institute, INSERM 1163, Paris Descartes University, Paris, France.
Epilepsy Department, University Hospitals of Lyon, Lyon, France.
Epilepsy Behav. 2019 Apr;93:133-137. doi: 10.1016/j.yebeh.2018.12.014. Epub 2019 Jan 6.
There is limited information about the effectiveness of transition programs for youth moving from pediatric to adult care with any chronic disease. Two Delphi studies and National Institute for Health and Care Excellence (NICE) guidelines about transition for epilepsy have suggested few critical outcome measures for transition. A single large prospective study found that the most important transition program elements were appropriate parent involvement, promotion of health self-efficacy, and meeting the adult team before transfer. Two Cochrane reviews of the value of transition for epilepsy found insufficient evidence to establish or refute the value of various programs, although evaluation of a few programs suggested a great deal of family/patient satisfaction. The cost of transition programs and their cost effectiveness have also not been established except for renal transplantation where transition programs were associated with fewer losses of the transplanted kidneys, a cost-effective outcome. Published data on the overall cost of care for children and adults with epilepsy may be helpful to establish a business plan for a transition program, and are briefly reviewed. Establishing cost effectiveness of transition programs for epilepsy would promote their establishment and viability. However, a number of studies will be needed based on the nature of the program, the healthcare system where it is carried out, and the type of epilepsy. In fee-for-service health systems, the reevaluation of patients with epilepsy prior to transfer may be sufficient to cover the costs of the transition program, whereas in single payer systems, there may be positive downstream health or societal benefits that justify the costs. A theoretical framework for comprehensive evaluation of epilepsy transition programs is needed. The Triple Aim Framework seems applicable with focus on population health, patient experiences, and cost and has the potential to assess transition interventions in the context of system-wide improvements in healthcare. Transition programs in general have not been well evaluated, and very little evaluation data exist regarding transition programs for epilepsy. We recommend more evaluative research using rigorous methodology to comprehensively assess these programs.
关于患有任何慢性病的青少年从儿科过渡到成人护理的过渡计划的有效性，信息有限。两项德尔菲研究和国家卫生与保健卓越研究所（NICE）关于癫痫过渡的指南建议了一些过渡的关键结果衡量标准。一项大型前瞻性研究发现，过渡计划最重要的要素是适当的家长参与、促进健康自我效能感以及在转移前与成人团队会面。两项关于癫痫过渡价值的 Cochrane 综述发现，没有足够的证据来确定或反驳各种方案的价值，尽管对少数方案的评估表明患者及其家属满意度很高。除了肾移植，过渡计划与更少的移植肾脏丢失相关，具有成本效益，否则，过渡计划的成本及其成本效益尚未确定。发表的关于儿童和成人癫痫患者总体护理成本的数据可能有助于制定过渡计划的业务计划，并进行了简要回顾。确定癫痫过渡计划的成本效益将促进其建立和可行性。然而，需要根据计划的性质、实施计划的医疗保健系统以及癫痫的类型进行多项研究。在按服务收费的医疗保健系统中，在转移前重新评估癫痫患者可能足以支付过渡计划的费用，而在单一支付者系统中，可能存在积极的下游健康或社会效益，证明成本合理。需要建立一个全面评估癫痫过渡计划的理论框架。三重目标框架似乎适用，重点是人群健康、患者体验以及成本，并且有可能根据医疗保健系统的整体改善来评估过渡干预措施。总体而言，过渡计划的评估并不完善，关于癫痫过渡计划的数据很少。我们建议使用严格的方法进行更多的评估研究，以全面评估这些计划。
