American Journal of Transplantation ( IF 8.8 ) Pub Date : 2022-07-23 , DOI: 10.1111/ajt.17157 Ghady Haidar 1 , Divya Bhamidipati 2 , Linda Despines 1 , Colleen Sullivan 3 , Susan Stuart 3 , J Michael Beckham 1 , Deborah K McMahon 1 , Peter Veldkamp 1
To the Editor:
Solid organ transplantation (SOT) is considered standard of care for persons with HIV (PWH) and end-stage organ failure.1 However, PWH experience higher waitlist mortality compared to HIV-uninfected individuals. Under the HIV Organ Policy Equity (HOPE) Act, it is acceptable to perform transplants using organs from deceased donors with HIV into recipients with HIV.1 However, there remains a significant discrepancy between the supply and demand of organs for waitlisted PWH,2, 3 which is exacerbated by the poor knowledge of HIV-to-HIV transplantation among PWH. In one survey, although approximately 80% of PWH were willing to be deceased donors and believed that donation would reduce stigma, only 24.6% knew about the HOPE Act, and only 21% were registered donors.4 We sought to estimate the proportion of PWH who are registered organ donors at UPMC's Ryan White-funded HIV clinic and increase donor registration among PWH. The project was approved by UPMC's Quality Review Committee (#1756).
We collaborated with our organ procurement organization (OPO), the Center for Organ Recovery & Education (CORE), and designed donor registration cards (“CORE cards”) to collect the minimum information required for donor registration and assess attitudes about donation (Figure 1). With the support of clinic leadership and HIV providers, we prospectively distributed CORE cards to PWH during all HIV clinic sessions (8 half-days/week) in the intervention period. Clinicians were encouraged to provide education and counseling, though this was not a formal requirement and left to the discretion of individual providers based on the nature of the visit (e.g., routine vs. urgent), clinic workflows, and whether the patient explicitly asked questions about donation. Data from completed CORE cards were electronically transcribed, and completed cards were mailed to the CORE. CORE staff updated the donor status of individuals who wished to become donors in the national registry without linkage to HIV status.
Between July 2018 and April 2019, 1528 unique PWH were seen at our HIV clinic, 856 of whom completed the CORE cards. The median age was 52 years (IQR 41–60). Interestingly, 11.4% (98/856) of individuals were already registered donors. After the intervention, an additional 302 individuals completed the CORE cards correctly and were registered to become donors, increasing the proportion of registered individuals to 46.7% (400/856). During the same period, data obtained from the Pennsylvania Department of Transportation (PennDOT) showed that 48.9% (549 718/1 123 698) of Department of Motor Vehicles (DMV) customers in counties served by CORE registered as organ donors (personal communication, CS through PennDOT database). We then analyzed responses from 129 individuals who both chose not to register and also provided a reason for their choice. Twenty-one percent (27/129) cited having HIV as the reason for declining to register. Other reasons included needing additional time to consider donation (13.2%, 17/129), religion (5.4%, 7/129), non-HIV comorbidities (2.3%, 3/129), and distrust of the healthcare system (0.8%, 1/129).
Challenges to implementing this intervention in a busy Ryan White clinic included staff effort, limited physician time for counseling, and a paper-based process with only essential data captured. Nonetheless, we demonstrated that although relatively few PWH in our HIV clinic were aware of their ability to become organ donors, our intervention substantially increased the number of PWH who registered as donors, with a post-intervention proportion of donors mirroring that of the general population through the DMV (expected to represent primarily persons without HIV). That 21% of respondents declined registration because of a false belief that HIV itself precludes organ donation highlights the need to increase awareness of HIV and organ donation. Since only a fraction of kidneys and livers from donors with HIV are transplanted,3, 5 multidisciplinary collaborations between OPOs, the United Network for Organ Sharing, Ryan White Clinics, and transplant centers are needed to increase awareness around HIV-to-HIV transplants. Similar approaches to ours may be considered to increase the size of the donor pool and reduce the stigma associated with HIV.
中文翻译:
一项增加艾滋病病毒感染者器官捐献者登记的倡议
致编辑:
实体器官移植 (SOT) 被认为是 HIV 感染者 (PWH) 和终末期器官衰竭患者的标准治疗。1然而,与未感染 HIV 的人相比,PWH 的等待名单死亡率更高。根据 HIV 器官政策公平 (HOPE) 法案,使用已故 HIV 捐赠者的器官移植到 HIV 接受者中是可以接受的。1然而,候补 PWH 的器官供需之间仍然存在显着差异,2, 3由于 PWH对 HIV 到 HIV 移植的了解不足,这种情况更加严重。在一项调查中,虽然大约 80% 的 PWH 愿意成为已故捐献者并认为捐献可以减少耻辱感,但只有 24.6% 的人知道 HOPE 法案,并且只有 21% 的人是注册捐献者。4我们试图估计在 UPMC 的 Ryan White 资助的 HIV 诊所注册器官捐献者的 PWH 比例,并增加 PWH 中的捐献者登记。该项目获得了 UPMC 的质量审查委员会 (#1756) 的批准。
我们与我们的器官采购组织 (OPO)、器官恢复与教育中心 (CORE) 合作,设计了捐赠者登记卡(“CORE 卡”)以收集捐赠者登记所需的最少信息并评估捐赠态度(图 1) ). 在诊所领导和 HIV 提供者的支持下,我们在干预期间的所有 HIV 诊所会议期间(8 个半天/周)前瞻性地将 CORE 卡分发给 PWH。鼓励临床医生提供教育和咨询,尽管这不是正式要求,并由个别提供者根据访问的性质(例如,常规还是紧急)、诊所工作流程以及患者是否明确提出问题自行决定关于捐赠。来自完成的 CORE 卡的数据被电子转录,并将完成的卡片邮寄到 CORE。CORE 工作人员在国家登记处更新了希望成为捐助者的个人的捐助者身份,而与 HIV 状况无关。
2018 年 7 月至 2019 年 4 月期间,我们的 HIV 诊所接诊了 1528 名独特的 PWH,其中 856 名完成了 CORE 卡。中位年龄为 52 岁 (IQR 41–60)。有趣的是,11.4% (98/856) 的个人已经注册为捐赠者。干预后,又有 302 人正确完成 CORE 卡并登记成为捐赠者,登记人数比例增加到 46.7%(400/856)。同期,从宾夕法尼亚州交通部 (PennDOT) 获得的数据显示,在 CORE 服务的县中,48.9% (549 718/1 123 698) 的机动车辆部 (DMV) 客户注册为器官捐献者(个人通讯, CS 通过 PennDOT 数据库)。然后,我们分析了 129 个人的回答,他们都选择不注册,并提供了他们选择的理由。百分之二十一 (27/129) 将感染 HIV 列为拒绝注册的原因。其他原因包括需要更多时间考虑捐献 (13.2%, 17/129)、宗教 (5.4%, 7/129)、非 HIV 合并症 (2.3%, 3/129) 以及对医疗系统的不信任 (0.8%) , 1/129).
在繁忙的 Ryan White 诊所实施这种干预措施面临的挑战包括工作人员的努力、有限的医生咨询时间以及仅捕获基本数据的纸质流程。尽管如此,我们证明,尽管我们 HIV 诊所中相对较少的 PWH 意识到他们有能力成为器官捐赠者,但我们的干预大大增加了注册为捐赠者的 PWH 数量,干预后捐赠者的比例与普通人群的比例相似通过 DMV(预计主要代表未感染 HIV 的人)。21% 的受访者拒绝注册是因为错误地认为 HIV 本身会阻止器官捐献,这凸显了提高 HIV 和器官捐献意识的必要性。由于只有一小部分来自携带 HIV 的捐赠者的肾脏和肝脏被移植,3、5需要 OPO、器官共享联合网络、Ryan White 诊所和移植中心之间的多学科合作,以提高人们对 HIV 到 HIV 移植的认识。可以考虑采用与我们类似的方法来增加供体库的规模并减少与 HIV 相关的耻辱感。