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

• 批准号: 8865692
• 负责人: Maureen Ellen Lyon
• 金额: $ 45.58万
• 依托单位: CHILDREN'S RESEARCH INSTITUTE
• 依托单位国家: 美国
• 财政年份: 2012
• 资助国家: 美国
• 起止时间: 2012-09-27 至 2016-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8865692
• 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; Emergency department visit; Emotional; Enrollment; Event; Exercise; Family; Gays; Goals; Growth; HIV; HIV Seropositivity; Hand; Health; Healthcare; Hepatitis C; Highly Active Antiretroviral Therapy; Hospitalization; Hospitals; Human immunodeficiency virus test; Individual; Intervention; Interview; Lesbian; Life; 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; 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; satisfaction; social; standard of care; surrogate decision maker

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先进的姑息治疗计划，在艾滋病（PLWA）或限制生命的合并症的成年人中减轻痛苦，最大限度地提高生活质量。没有ACP或ACP不良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想要的护理，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。以证据为基础的理论模型，以家庭为中心（FACE）的提前护理计划，是专为黑人青少年艾滋病毒感染者，并发现在这一人群中是可以接受的，导致提前指令的普遍完成，并增加一致性关于临终患者和他们的代理决策者之间的偏好。鉴于ACP在黑人艾滋病毒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（一个艾滋病毒/艾滋病流行水平和种族死亡率显著健康差异的城市）患有晚期艾滋病和/或限制生命的合并症的成年人。这项针对成人PLWA及其替代决策者的充分有效的随机、双臂、对照临床试验旨在确定FACE是否增加了临终治疗偏好的一致性，并可随着时间的推移而维持，以及FACE是否对生活质量产生积极影响。第一个目的是确定影响决策的变量，就提前护理计划（ACP）的成人PLWA，并确定独特的人为中心的需求的亚组PLWA，因为这些是目前未知的。第二个目标是确定ACP中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确定替代决策者并使用预先指令的可能性来最大限度地减少健康差异。将从四家医院的诊所招募患者，并将以2：1的比例随机分配288例患者/代理人配对（N=576）[即，面部干预（N=192对），对照（N=96对）]。将排除HIV痴呆、自杀、凶杀或精神病患者。每周将与经过培训/认证的主持人进行两次60分钟的会议。被随机分配到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）;对照组的二人组将接受发育史（第1节）和营养和锻炼提示（第2节）。将在基线、干预后3、6、12和18个月对患者及其代理人进行标准化自我报告测量。满意度和沟通的措施将在第1和第2次会议后进行。