1Department of Neurosurgery and.
2Division of Pediatric Neurosurgery, University of Alabama at Birmingham, Alabama.
Neurosurg Focus. 2019 Oct 1;47(4):E17. doi: 10.3171/2019.7.FOCUS19425.
In spina bifida (SB), transition of care from the pediatric to adult healthcare settings remains an opportunity for improvement. Transition of care is necessarily multidimensional and focuses on increasing independence, autonomy, and personal responsibility for health-related tasks. While prior research has demonstrated that effective transition can improve health outcomes and quality of life while reducing healthcare utilization, little is known about the most advantageous transition program components/design. The individualized transition plan (ITP) was developed to optimize the readiness of the adolescent with SB for adult healthcare. The ITP is a set of clearly articulated, mutually developed goals that arise from best available data on successful transition and are individualized to meet the individual challenges, needs, and attributes of each patient and family.
Prospectively completed ITPs were retrospectively reviewed from June 2018 to May 2019. Demographic and disease characteristics were collected, and specific goals were reviewed and categorized.
Thirty-two patients with an ITP were included. The cohort was 50% male and had a mean age of 16.4 years. For goal 1 (maximize education), the most common goal was to complete a career interest survey (44%), followed by researching application/admission requirements for programs of interest (25%), shadowing in and/or visiting a workplace (16%), and improving high school performance (16%). For goal 2 (bowel management), most patients (59%) had a working bowel program with few or no bowel accidents. Eight patients (25%) were having more than the desired number of bowel accidents and received formal consultation with a gastroenterologist. Five patients (16%) needed only minor adjustments to their bowel management regimen. Goal 3 (SB program coordinator goal) focused on documenting medical and/or surgical history for the majority of patients (66%). Other goals aimed to increase patient communication in healthcare settings or utilize available community resources.
The authors developed an evidence-based ITP that focuses around 5 goals: maximizing education, bowel continence, and goals set by the SB clinic coordinator, parent/caregiver, and patient. Although developed for the authors' SB clinic, the ITP concept is applicable to transition of care in any chronic childhood illness.
在脊柱裂（SB）中，从儿科到成人医疗保健机构的护理过渡仍然是一个需要改进的机会。护理过渡必然是多方面的，重点是提高独立性、自主性和对与健康相关任务的个人责任感。尽管先前的研究表明，有效的过渡可以改善健康结果和生活质量，同时减少医疗保健的利用，但对于最有利的过渡计划组成部分/设计知之甚少。个体化过渡计划（ITP）旨在优化患有 SB 的青少年接受成人医疗保健的准备。ITP 是一组明确阐述的、相互制定的目标，这些目标源于成功过渡的最佳可用数据，并根据每个患者和家庭的个体挑战、需求和属性进行个性化定制。
回顾性分析了 2018 年 6 月至 2019 年 5 月期间前瞻性完成的 ITP。收集了人口统计学和疾病特征，并对具体目标进行了回顾和分类。
共有 32 名患者的 ITP 被纳入研究。该队列的 50%为男性，平均年龄为 16.4 岁。在目标 1（最大限度地提高教育）中，最常见的目标是完成职业兴趣调查（44%），其次是研究感兴趣的项目的申请/入学要求（25%）、实习和/或参观工作场所（16%）以及提高高中成绩（16%）。在目标 2（肠道管理）中，大多数患者（59%）拥有工作肠道计划，很少或没有肠道意外。有 8 名患者（25%）出现的肠道意外次数超过预期，他们接受了胃肠病学家的正式咨询。有 5 名患者（16%）仅需要对肠道管理方案进行微小调整。目标 3（SB 项目协调员目标）侧重于记录大多数患者的医疗和/或手术史（66%）。其他目标旨在增加患者在医疗保健环境中的沟通能力或利用可用的社区资源。
作者制定了一项基于证据的 ITP，重点关注 5 个目标：最大限度地提高教育、肠道完整性，以及 SB 诊所协调员、家长/照顾者和患者设定的目标。尽管该 ITP 是为作者的 SB 诊所制定的，但它适用于任何慢性儿童疾病的过渡护理。
