A population-based online study of the transition of young adults with perinatal HIV infection to adult clinical care

摘要： 抗逆转录病毒治疗的进展导致围产期艾滋病毒感染者的存活率显著增加， 感染的儿童进入成年期。然而，向成人艾滋病毒护理的过渡充满了 随着青少年进入成年，他们承担的责任越来越大， 以及其他复杂的、可能与艾滋病毒有关的问题，如认知缺陷， 抑郁和耻辱感支持诊所制定正式过渡计划的指导方针， 发表了。尽管如此，美国各地的过渡方式差异很大。 了解影响转移到成人护理的能力的因素对于支持 艾滋病毒感染的青年在过渡期，因此，使他们继续受到照顾。为了实现这一目标， 为了保持他们对长期研究的兴趣，我们必须考虑研究方法， 适应年轻人的生活方式，同时保持有效的数据收集。几 经验研究系统地评估了当前艾滋病医疗保健转型的有效性 实践，特别是关于临床重要结果。现有的文献大多是 定性，提供对患者，护理人员和 供应商认为突出。本研究将扩展这项研究，以探讨障碍 以及直接影响客观临床结果的促进者，以确定哪些实践 是有效的，应该更广泛地传播。具体来说，我们将确定 个人层面因素，例如过渡年龄、管理医疗保健的能力和参与者 参与过渡决策，以及临床层面的结构和实践，包括共同 定位心理支持服务，书面过渡计划，成人护理提供模式，以及 过渡联络员/案件管理员的早期存在与长期保留有关， 成人保健和病毒载量抑制后过渡。受试者招募通过 将对监测数据和基于网络的数据收集策略进行评估，以确定 这些方法作为时间和资源密集型诊所的替代方法的可行性 调查研究。

Abstract: Advances in antiretroviral therapy have led to dramatic increases in survival of perinatally HIV- infected children into adulthood. The transition to adult HIV care, however, is replete with challenges due to the increased responsibility placed on adolescents as they enter adulthood, as well as other complex, potentially HIV-related concerns such as cognitive deficits, depression, and stigma. Guidelines to support clinics in developing formal transition plans have been published. Nonetheless, approaches to transition vary widely across the US. Understanding the factors that impact the ability to move to adult care is critical to supporting HIV-infected youth as they transition and, hence, retaining them in care. To accomplish this, and to maintain their interest in long-term research, we must consider research methods that accommodate the lifestyles of young adults while maintaining valid data collection. Few empirical studies have systematically assessed the efficacy of current HIV healthcare transition practices, especially with regards to clinically important outcomes. Existing literature is largely qualitative, providing insights into the barriers and concerns that patients, caregivers and providers perceive as salient. This study will expand upon this research to explore the barriers and facilitators that directly affect objective clinical outcomes so as to determine which practices are effective and should be disseminated more widely. Specifically, we will determine whether individual level–factors such as age at transition, ability to manage health care, and participant involvement in transition decisions, and clinic-level structures and practices, including co- located psychological support services, written transition plans, adult care delivery models, and early presence of a transition liaison/case manager are associated with long-term retention in adult health care and viral load suppression post-transition. Subject recruitment through surveillance data and web-based data collection strategies will be evaluated to determine the feasibility of these methods as an alternative to time- and resource-intensive clinic-based research studies.