Development and Validation of a Multidimensional Index of Engagement in HIV Care

描述(由申请人提供)：在美国，只有不到一半的艾滋病毒携带者正在接受持续的治疗，只有四分之一的人有无法检测到的病毒载量。《国家艾滋病毒/艾滋病战略》将艾滋病毒感染者的护理和治疗列为优先事项，但显然需要提高护理保留率。关于艾滋病毒护理的研究使用初级保健预约的出勤率来评估患者是否在接受护理。虽然就诊是必要的，但这是不够的，也不一定能反映患者的参与度。参与护理是关于患者体验以及与提供者和护理站点的互动。我们建议创建一个以患者为中心的艾滋病毒护理参与度指数，该指数将在卫生保健授权模型的框架内，该模型指的是以参与、知情、协作、承诺和容忍的方式参与护理 不确定性。我们将通过与患者、提供者和研究专家建立共识的协作过程，使用迭代的在线德尔福调查和面对面的焦点小组来创建指数。然后，我们将把这些叙述性的发现转化为量表条目，并通过与患者的认知访谈进一步发展它们。我们将通过对接受CFAR综合临床系统网络(CNICs)中报告结果的患者的样本进行I治疗，并检查回顾、横断面和预期的预约和病毒载量数据来验证该指数。由此产生的艾滋病毒护理参与度指数将对临床护理和研究产生影响，确定哪些患者面临不良临床结果的风险，并提供一个衡量标准，以制定和评估旨在改善护理参与度的干预措施。

DESCRIPTION (provided by applicant): Less than half of individuals living with HIV in the United States are receiving ongoing care, and only one- quarter have an undetectable viral load. The National HIV/AIDS Strategy prioritizes care and treatment of HIV- infected individuals, yet improvement in care retention rates is clearly needed. Research on HIV care has used attendance at primary care appointments to assess whether patients are in care. While medical visits are necessary, they are not sufficient and do not necessarily reflect a patient's level of engagement. Engagement in care is about the patient experience and interactions with providers and the care site. We propose to create a patient-centered Index of Engagement in HIV Care that will be framed within a model of Health Care Empowerment, which refers to participation in care in a way that is engaged, informed, collaborative, committed, and tolerant of uncertainty. We will create the index through a collaborative process of consensus- building with patients, providers, and research experts using iterative online Delphi surveys and in-person focus groups. We will then translate these narrative findings into scale items and develop them further through cognitive interviewing with patients. We will validate the index by administering i to a sample of patients undergoing the Patient Reported Outcomes within the CFAR Network of Integrated Clinical Systems (CNICS) and examining retrospective, cross-sectional, and prospective appointment and viral load data. The resulting Index of Engagement in HIV Care will have implications for both clinical care and research, identifying patients who are at risk fo poor clinical outcomes and providing a metric by which to develop and evaluate interventions aiming to improve engagement in care.