Palliative Care in People Living with AIDS: Integrating into Standard of Care

艾滋病患者的姑息治疗：纳入护理标准

基本信息

批准号：
8675000
负责人：
Maureen Ellen Lyon
金额：
$ 41.24万
依托单位：
CHILDREN'S RESEARCH INSTITUTE
依托单位国家：
美国
项目类别：
财政年份：
2012
资助国家：
美国
起止时间：
2012-09-27 至 2017-06-30
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/8675000
关键词：
AIDS Dementia Complex AIDS/HIV problem Access to Information Acquired Immunodeficiency Syndrome Address Adherence Adult Advance Care Planning Advance Directives African Area Caregivers Caring Cessation of life Chronic Disease Cities Clinic Communication Comorbidity Conflict (Psychology)Consultations Control Groups Controlled Clinical Trials Death Rate Decision Making Development Dialysis procedure Disease Distal District of Columbia Emotional Enrollment Event Exercise Family Gays Goals Growth HIV HIV Seropositivity Hand Healthcare Hepatitis C Highly Active Antiretroviral Therapy Hospitalization Hospitals Human immunodeficiency virus test Individual Intervention Interview Lesbian Life Mails Measures Medical Minor Surgical Procedures Modeling Outcome Palliative Care Participant Patient Preferences Patient Self-Determination Act Patient Self-Report Patients Pattern Persons Population Proxy Psychotic Disorders Quality of life Race Randomized Randomized Controlled Clinical Trials Recording of previous events Recruitment Activity Religion Research Personnel Staging Subgroup Suicide Surveys Teenagers Testing Theoretical model Time Training Typology Visit Washington arm base decision-making capacity design end of life evidence base health care service utilization health disparity innovation loved ones metropolitan multidisciplinary nutrition person centered post intervention preference programs psychosocial public health relevance satisfaction social standard of care surrogate decision maker

项目摘要

DESCRIPTION (provided by applicant): The goal of this multidisciplinary study is to relieve suffering and maximize quality of life through advance palliative care planning in adult persons living with AIDS (PLWA) or life-limiting co-morbidities. Negative consequences of no or poor ACP may include unmet care or delivery of unnecessary or unwanted care, conflict erupting in the ICU, and dismissal of non-relative caregivers (e.g., lesbian or gay partners). This will be the first study to assess outcomes of an ACP model in adult PLWA, integrating person-centered (growth mixed model) and traditional variable-centered analyses. The evidence-based theoretical model, Family Centered (FACE) Advance Care Planning, was designed for Black teens living with HIV and found to be acceptable in this population, resulting in universal completion of advance directives and increased congruence regarding end-of-life preferences between patients and their surrogate decision-makers. Given the underutilization of ACP in Black HIV positive teens and its demonstrated benefits, this proposal will apply the existing FACE model to adults living with advanced AIDS and/or life-limiting co-morbidities in Washington, DC, a city with endemic levels of HIV/AIDS and significant health disparities in death rates by race. This adequately powered randomized, 2-arm, controlled clinical trial of adult PLWA and their surrogate decision-makers proposes to determine if FACE increases congruence in end-of-life treatment preferences and can be maintained over time, and if FACE has a positive impact on quality of life. The first aim is to identify the variables influencing decision-making with respect to advance care planning (ACP) for adult PLWA, and determine the unique person-centered needs of subgroups of PLWA, as these are currently unknown. The second aim is to identify the best approach for standard of care in ACP, a key component of palliative care, as an end-of-life support. This approach may minimize health disparities by increasing the likelihood that adult PLWA will identify a surrogate decision-maker and use advance directives. Patients will be recruited from four hospital-based clinics and 288 patient/surrogate dyads (N=576) will be randomized in a 2:1 ratio [i.e., FACE intervention (N=192 dyads), controls (N=96 dyads)]. Patients with HIV dementia, suicidality, homicidality or psychosis will be excluded. Two 60-minute sessions will be conducted with a trained/certified facilitator at weekly intervals. Dyads randomized to FACE will complete the Respecting Choices Interview(R) (Session1) and the Five Wishes(c) (Session 2); dyads in the control group will receive a Developmental History (Session 1) and Nutrition and Exercise Tips (Session 2). Standardized self-report measures will be administered to patients and their surrogates at baseline, 3, 6, 12 and 18 months post intervention. Measures of satisfaction and communication will be administered after Sessions 1 and 2.

描述（由申请人提供）：这项多学科研究的目标是通过对患有艾滋病 (PLWA) 或限制生命的共病的成年患者进行预先的姑息治疗计划来减轻痛苦并最大限度地提高生活质量。没有或不良 ACP 的负面后果可能包括未得到满足的护理或提供不必要或不需要的护理、ICU 中爆发冲突以及解雇非亲属护理人员（例如女同性恋或男同性恋伴侣）。这将是第一项评估 ACP 模型在成人 PLWA 中的结果的研究，整合了以人为中心（增长混合模型）和传统的以变量为中心的分析。基于证据的理论模型“以家庭为中心 (FACE) 预先护理计划”是为感染艾滋病毒的黑人青少年设计的，并被发现在该人群中是可以接受的，从而导致普遍完成预先指示并提高临终偏好的一致性患者与其代理决策者之间的关系。鉴于 ACP 在黑人 HIV 阳性青少年中的利用不足及其已证明的益处，该提案将把现有的 FACE 模型应用于华盛顿特区（艾滋病毒流行城市）患有晚期艾滋病和/或限制生命的合并症的成年人/艾滋病和不同种族死亡率的显着健康差异。这项针对成人 PLWA 及其代理决策者的充分有力的随机、双组对照临床试验旨在确定 FACE 是否会增加临终治疗偏好的一致性并可以随着时间的推移而保持，以及 FACE 是否具有积极影响关于生活质量。第一个目标是确定影响成人 PLWA 预先护理计划 (ACP) 决策的变量，并确定 PLWA 子群体以人为本的独特需求，因为这些需求目前尚不清楚。第二个目标是确定 ACP 护理标准的最佳方法，ACP 是姑息治疗的关键组成部分，作为临终支持。这种方法可以通过增加成年 PLWA 识别替代决策者并使用预先指示的可能性来最大限度地减少健康差异。将从四家医院诊所招募患者，288 名患者/代理人双人组 (N=576) 将以 2:1 的比例随机分配 [即 FACE 干预组 (N=192 组)，对照组 (N=96 组)] 。患有艾滋病毒痴呆、自杀、杀人或精神病的患者将被排除在外。每周将由经过培训/认证的辅导员举办两次每次 60 分钟的课程。随机分配到 FACE 的二人组将完成尊重选择访谈(R)（第 1 节）和五个愿望(c)（第 2 节）；对照组的两人将收到发育史（第 1 节）和营养和运动提示（第 2 节）。将在基线、干预后 3、6、12 和 18 个月时对患者及其代理人进行标准化自我报告测量。第 1 节和第 2 节后将进行满意度和沟通测量。