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

一项基于人群的在线研究，探讨围产期 HIV 感染的年轻人向成人临床护理的过渡

• 批准号: 9205982
• 负责人: George R Seage
• 金额: $ 38.11万
• 依托单位: HARVARD SCHOOL OF PUBLIC HEALTH
• 依托单位国家: 美国
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-08-04 至 2021-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9205982
• 关键词: AIDS/HIV problem; Academy; Adherence; Adolescent; Adult; Affect; Age; American; Anti-Retroviral Agents; Behavior; Caregivers; Caring; Case Manager; Child; Childhood; Chronic; Clinic; Clinical; Cognitive; Cohort Studies; Complex; Data Collection; Ensure; Face; Guidelines; HIV; HIV Infections; HIV-1; Health; Healthcare; Individual; Life; Life Style; Literature; Massachusetts; Mental Depression; Methods; Modeling; Online Systems; Outcome; Participant; Patients; Pediatrics; Perinatal; Pharmaceutical Preparations; Pilot Projects; Population; Preparation; Provider; Psychosocial Assessment and Care; Public Health; Publishing; RNA; Recommendation; Recruitment Activity; Research; Research Methodology; Resources; Sampling; Services; Structure; Time; Translating; Viral Load result; Work; Writing; Youth; abstracting; antiretroviral therapy; base; care delivery; clinical care; coping; cost efficient; experience; improved; insight; interest; medical appointment; population based; programs; psychologic; research study; social stigma; study population; surveillance data; young adult

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.

抽象的： 抗逆转录病毒疗法的进步使围产期艾滋病毒感染者的存活率急剧增加 然而，向成人艾滋病毒护理的过渡充满了挑战。 由于青少年进入成年期所承担的责任增加而面临的挑战， 以及其他复杂的、可能与艾滋病毒相关的问题，例如认知缺陷， 支持诊所制定正式过渡计划的指南已经制定。 然而，美国各地的转型方法差异很大。 了解影响转向成人护理能力的因素对于支持至关重要 感染艾滋病毒的青少年在过渡过程中需要接受护理以实现这一目标，以及 为了保持他们对长期研究的兴趣，我们必须考虑以下研究方法： 适应年轻人的生活方式，同时保持有效的数据收集很少。 实证研究系统地评估了当前艾滋病毒医疗保健转型的有效性 实践，特别是关于临床重要结果的现有文献大部分。 定性，提供对患者、护理人员和关注的障碍和担忧的见解 这项研究将在本研究的基础上进行扩展，以探索其中的障碍。 和直接影响客观临床结果的促进者，以确定哪些实践 具体来说，我们将确定是否有效并应该更广泛地传播。 个人层面——过渡年龄、管理医疗保健的能力和参与者等因素 参与过渡决策以及诊所层面的结构和实践，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/案件经理的早期存在与长期保留相关 通过受试者招募进行成人保健和病毒载量抑制。 将评估监测数据和基于网络的数据收集策略，以确定 这些方法作为时间和资源密集型临床替代方案的可行性 研究。