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: 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
• 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

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人患者推进姑息治疗计划，减轻痛苦并最大限度地提高生活质量。没有或不良的非加太护理计划的负面后果可能包括得不到满足的护理或提供不必要或不想要的护理、ICU爆发冲突以及解雇非亲属照顾者(例如女同性恋或男同性恋伴侣)。这将是 第一项研究是评估成人PLWA中ACP模型的结果，将以人为中心(成长混合模型)和传统的以变量为中心的分析相结合。以证据为基础的理论模式，以家庭为中心(Face)高级护理计划，是为感染艾滋病毒的黑人青少年设计的，在这一人群中被发现是可以接受的，结果是普遍完成了提前指示，并增加了患者及其代孕决策者之间关于临终偏好的一致性。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好处，这项提案将把现有的Face模型应用于华盛顿特区患有晚期艾滋病和/或限制生命的共病的成年人，华盛顿特区是一个艾滋病毒/艾滋病流行水平和不同种族死亡率存在显著健康差异的城市。这项对成人PLWA和他们的代理决策者进行的充分有效的随机、双臂对照临床试验建议确定Face是否增加了临终治疗偏好的一致性，并可以随着时间的推移保持下去，以及Face是否对生活质量有积极影响。第一个目标是确定影响成人PLWA提前护理计划(ACP)决策的变量，并确定PLWA亚群以人为中心的独特需求，因为这些需求目前尚不清楚。第二个目标是确定作为临终支持的临终关怀的关键组成部分--非典的最佳护理标准。这种方法可能会增加成年PLWA确定替代决策者并使用预先指令的可能性，从而将健康差距降至最低。患者将从四个以医院为基础的诊所招募，288名患者/代孕者(N=576)将以2：1的比例随机分配[即面部干预(N=192个二元体)，对照组(N=96个二元体)]。艾滋病毒痴呆症、自杀、凶杀或精神病患者将被排除在外。每周将由一名训练有素/经认证的主持人主持两次60分钟的会议。随机分配到面对面的二人组将完成尊重选择面谈(注册商标)(第一阶段)和五个愿望(C)(第二阶段)；对照组的两人将接受发展史(第一阶段)和营养和锻炼提示(第二阶段)。将在基线、干预后3个月、6个月、12个月和18个月对患者及其代理人实施标准化的自我报告措施。在第一次和第二次会议之后，将进行满意度和沟通的测量。