纵向评估过渡服务（“LETS 研究”）：结果评估方案。
Longitudinal Evaluation of Transition Services ("LETS Study"): protocol for outcome evaluation.
机构信息
Bloorview Research Institute, Toronto, Canada.
出版信息
BMC Pediatr. 2012 May 15;12:51. doi: 10.1186/1471-2431-12-51.
BACKGROUND
Because of advances in medical treatment, most children with physical disabilities can expect to achieve near normal life spans. Typically, coordinated teams of health care providers in specialized pediatric settings care for these children. As these children reach adulthood, however, the availability of services and expertise changes because the adult health care system has different processes designed to meet their specialized needs. Gaps in continuity of care during the transition from pediatric to adult services, and associated poor health outcomes are well documented. In response, new models of care are being introduced to address the complex process of health care transition. This paper describes a study protocol of a client-centred, prospective, longitudinal, mixed-method evaluation of linked model of health care across the lifespan (the LIFEspan Model), offered by a pediatric rehabilitation centre and an adult rehabilitation centre.
METHOD
This project will include a process and an outcome evaluation of the LIFEspan Model. The process evaluation will detail the specific service delivery that occurs with respect to preparation for transition and transfer of care through chart audits of pediatric medical records and qualitative interviews with LIFEspan staff. The outcome evaluation will measure the effect of the model on: 1) maintaining continuity within the health care system from pediatric to adult care; and 2) secondary outcomes related to health, well-being, social participation, transition readiness, and health care utilization of youth with cerebral palsy and acquired brain injury. Standardized instruments will include Health Utilities Inventory, Assessment of Life Habits, Arc's Self-Determination, Assessment of Health-Related Quality of Life, Partners in Health Questionnaire, Social Support Questionnaire, and Self-Efficacy for Managing Chronic Disease.
DISCUSSION
The LETS study will be original in its undertaking of a prospective examination of outcomes 1-year post-transition, use of multiple comparison groups, and absence of disability-related exclusion criteria ensuring that the transition experiences of varied populations of young people and their families will be represented.
TRIAL REGISTRATION
http://www.clinicaltrials.gov, ID NCT00975338.
背景
由于医疗技术的进步，大多数身体残疾的儿童都有望达到接近正常的预期寿命。通常，在专门的儿科环境中，协调的医疗保健提供者团队会照顾这些儿童。然而，随着这些儿童成年，服务和专业知识的可用性会发生变化，因为成人保健系统具有不同的流程，旨在满足他们的特殊需求。在从儿科到成人服务的过渡期间，连续性护理的差距以及相关的健康结果不佳的情况已有充分记录。作为回应，正在引入新的护理模式来解决医疗保健过渡的复杂过程。本文描述了一项针对客户为中心、前瞻性、纵向、混合方法的研究方案，评估了儿科康复中心和成人康复中心提供的跨生命周期的联系式医疗保健模式（LIFESPAN 模型）。
方法
该项目将包括对 LIFESPAN 模型的过程和结果评估。过程评估将详细说明与过渡准备和护理转移有关的具体服务提供情况，方法是通过儿科病历的图表审计和与 LIFESPAN 工作人员的定性访谈。结果评估将衡量该模型对以下方面的影响：1）从儿科到成人护理的医疗保健系统内保持连续性；2）与健康、福利、社会参与、过渡准备以及脑瘫和后天性脑损伤青少年的医疗保健利用相关的次要结果。标准化工具将包括健康效用清单、生活习惯评估、Arc 的自我决定、健康相关生活质量评估、健康伙伴问卷、社会支持问卷和慢性疾病自我管理效能感。
讨论
LETS 研究将具有创新性，它将前瞻性地检查过渡后 1 年的结果，使用多个比较组，并且没有残疾相关的排除标准，从而确保代表不同人群的年轻人及其家庭的过渡经历。
试验注册
http://www.clinicaltrials.gov，ID NCT00975338。
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