Advance Care Planning (ACP) among Sexual and Gender Minority Individuals and Their Caregivers

性少数群体及其护理人员的预先护理计划 (ACP)

• 批准号: 10093464
• 负责人: Joel S. Weissman
• 金额: $ 4.95万
• 依托单位: BRIGHAM AND WOMEN'S HOSPITAL
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-09-11 至 2022-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10093464
• 关键词: Academy; Address; Adult; Advance Care Planning; Advance Directives; Aging; Algorithm Design; Caregivers; Caring; Clinical; Code; Collection; Communities; Complex; Conflict (Psychology); Data; Decision Making; Diagnosis; Discrimination; Ensure; Face; Family; Family dynamics; Fee-for-Service Plans; Gender; Gender Identity; Goals; Health; Health Personnel; Healthcare; Individual; Intervention; Interview; Legal; Measures; Medical; Medicare; Medicare claim; Methods; Motivation; Outcome; Parents; Participant; Pattern; Perception; Policies; Population; Primary Health Care; Provider; Proxy; Reporting; Research; Respondent; Role; Sampling; Science; Sex Orientation; Sexual and Gender Minorities; Specialist; Structure; Surveys; Underserved Population; Visit; Vulnerable Populations; Work; beneficiary; experience; follow-up; health disparity; health equity; improved; person centered; preference; research study; social stigma; transgender; trend; uptake

Sexual and gender minority individuals (SGM) face discrimination, stigma, and health disparities. Advance Care Planning (ACP) aims to ensure people receive medical care that is consistent with their goals, preferences, and values as they become seriously ill. Our work in the parent R01 is to study the trends, barriers, and facilitators to the uptake of ACP and its impact on care. However, there exists scant research on ACP in the SGM community. This mixed- methods supplemental proposal will build on our existing research to better understand ACP among SGM adults and their caregivers. Aim 1: To understand factors associated with Advance Care Planning (ACP) discussions among transgender or gender non-binary Medicare beneficiaries using claims data. Using Fee-for-Service Medicare claims, we will utilize a previously validated diagnosis code algorithm designed to identify transgender or gender non-binary beneficiaries to measure the rate of billed ACP visits. We will examine uptake and use of this code during the years 2016- 2018, compared with other high needs populations. Aim 2: To understand the needs, lived experiences, and challenges facing self-identified sexual and gender minority (SGM) adults around ACP. Using a national polling survey, we will compare SGM adults with other respondents on a limited number of ACP issues, including experience appointing healthcare proxies, and completion of Advance Directives (ADs). A subset of SGM respondents will be re-contacted for follow-up semi-structured interviews for a more in-depth qualitative exploration of advance care planning with clinical providers and the role of family/partners/caregivers, legal next of kin status, and perceptions of bias and/or discrimination. Identifying patterns around ACP rates and engagement among SGM adults will help inform person-centered interventions to facilitate high quality ACP discussions among vulnerable or underserved populations. This project will address a critical evidence gap in conducting research to advance the science of caring for aging SGM adults.

性和性别少数个体（SGM）面临歧视，耻辱和健康 差距。先进的护理计划（ACP）旨在确保人们得到医疗护理， 与他们的目标，偏好和价值观一致，因为他们患了重病。我们搞好 母公司R 01的任务是研究采用ACP的趋势、障碍和促进因素及其影响 照顾。然而，在SGM社区对ACP的研究很少。这种混合- 方法补充建议将建立在我们现有的研究，以更好地了解ACP 在SGM成年人和他们的照顾者中。 目的1：了解与高级护理计划（ACP）讨论相关的因素 跨性别或性别非二元医疗保险受益人使用索赔数据。 使用按服务付费的Medicare索赔，我们将使用先前验证的诊断代码 算法旨在识别跨性别或性别非二元受益人，以衡量 机场核心计划的收费率。我们将在2016年期间检查该代码的吸收和使用情况- 2018年，与其他高需求人群相比。 目标2：了解自我认同的需求，生活经历和面临的挑战 ACP周围的性和性别少数（SGM）成年人。 使用全国性的民意调查，我们将比较SGM成人与其他受访者在一个 ACP问题数量有限，包括任命医疗保健代理人的经验，以及 提前完成指令（AD）。将重新联系一部分SGM受访者， 后续半结构化访谈，对高级护理进行更深入的定性探索 与临床提供者一起规划，以及家庭/伴侣/护理人员、法律的近亲的角色 地位，以及偏见和/或歧视的看法。 确定SGM成人中ACP率和参与度的模式将有助于了解 以人为本的干预措施，以促进弱势群体或 服务不足的人群。该项目将解决一个关键的证据差距， 研究，以促进科学的照顾老龄SGM成人。

项目成果

Advance Care Planning Experiences Among Sexual and Gender Minority People.

• DOI: 10.1001/jamanetworkopen.2022.22993
• 发表时间: 2022-07-01
• 期刊: JAMA NETWORK OPEN
• 影响因子: 13.8
• 作者: Reich, Amanda Jane;Perez, Stephen;Fleming, Julia;Gazarian, Priscilla;Manful, Adoma;Ladin, Keren;Tjia, Jennifer;Semco, Robert;Prigerson, Holly;Weissman, Joel S.;Candrian, Carey
• 通讯作者: Candrian, Carey

Educational Resources and Self-Management Support to Engage Patients in Advance Care Planning: An Interpretation of Current Practice in the US.

• DOI: 10.1177/10499091211064834
• 发表时间: 2022-08
• 期刊: AMERICAN JOURNAL OF HOSPICE & PALLIATIVE MEDICINE
• 影响因子: 1.9
• 作者: Gazarian, Priscilla;Gupta, Avni;Reich, Amanda;Perez, Stephen;Semco, Robert;Prigerson, Holly;Ashana, Deepshikha;Dey, Tanujit;Carlston, Daniel;Cooper, Zara;Weissman, Joel;Ladin, Keren
• 通讯作者: Ladin, Keren

Use of Advance Care Planning Codes Among Transgender Medicare Beneficiaries.

在跨性别医疗保险受益人中使用预先护理计划代码。

• DOI: 10.1089/lgbt.2021.0340
• 发表时间: 2022
• 期刊: LGBT health
• 影响因子: 4.8
• 作者: Reich,AmandaJ;Manful,Adoma;Candrian,Carey;Semco,RobertS;Ladin,Keren;Prigerson,HollyG;Weissman,JoelS
• 通讯作者: Weissman,JoelS

Association of Billed Advance Care Planning with End-of-Life Care Intensity for 2017 Medicare Decedents.

• DOI: 10.1111/jgs.16683
• 发表时间: 2020-09
• 期刊: Journal of the American Geriatrics Society
• 影响因子: 6.3
• 作者: Gupta A;Jin G;Reich A;Prigerson HG;Ladin K;Kim D;Ashana DC;Cooper Z;Halpern SD;Weissman JS
• 通讯作者: Weissman JS

Advance care planning billing codes in patients undergoing TAVR is infrequent and associated with adverse TAVR outcomes.

接受 TAVR 患者的预先护理计划计费代码很少见，并且与不良 TAVR 结果相关。

• DOI: 10.1111/jgs.18045
• 发表时间: 2023
• 期刊: Journal of the American Geriatrics Society
• 影响因子: 6.3
• 作者: Shah,KhanjanB;Shah,SamirK;Manful,Adoma;Xiang,Lingwei;Reich,AmandaJ;Semco,RobertS;Tjia,Jennifer;Ladin,Keren;Weissman,JoelS
• 通讯作者: Weissman,JoelS