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

摘要： 抗逆转录病毒疗法的进步使围产期艾滋病毒的存活率大幅提高。 被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 挑战，因为青少年进入成年期的责任越来越大， 以及其他复杂的、可能与艾滋病毒相关的问题，如认知性DefiCits， 抑郁和耻辱。支持诊所制定正式过渡计划的指导方针 已经出版了。尽管如此，美国各地的转型方式大相径庭。 了解影响转到成人护理的能力的因素对于支持 在感染艾滋病毒的青年处于过渡时期，并因此将他们留在看护中。要做到这一点，并且 为了保持他们对长期研究的兴趣，我们必须考虑 适应年轻人的生活方式，同时保持有效的数据收集。一些 经验研究已经系统地评估了当前艾滋病毒医疗保健过渡的有效性 实践，特别是在临床重要结果方面。现有的文献在很大程度上 定性的，提供对患者、护理人员和 供应商认为这是突出的。本研究将在这项研究的基础上进一步探索障碍 以及直接影响客观临床结果的促进者，以确定哪些做法 都是有效的，应该更广泛地传播。具体来说，我们将确定是否 个人层面--转型年龄、管理医疗保健的能力和参与者等因素 参与过渡决策，以及临床一级的结构和做法，包括联合 提供心理支持服务、书面过渡计划、成人护理服务模式，以及 早期出现过渡联络人/案例经理与长期保留在 成人健康护理和过渡期后病毒载量抑制。通过以下途径招聘科目 将对监测数据和基于网络的数据收集战略进行评估，以确定 这些方法作为时间和资源密集型诊所的替代方案的可行性 研究性研究。

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.