Waterman Amy D, Gleason Jim, Lerminiaux Louise, Wood Emily H, Berrios Alexander, Meacham Laurie A, Osuji Anne, Pines Rachyl, Peipert John D
Division of Nephrology, David Geffen School of Medicine, University of California Los Angeles, Los Angeles, CA USA.
Terasaki Institute for Biomedical Innovation, University of California Los Angeles, Los Angeles, CA USA.
Curr Transplant Rep. 2020;7(4):301-310. doi: 10.1007/s40472-020-00295-x. Epub 2020 Sep 1.
To define patient advocacy and engagement for modern transplant and living donation care, particularly in light of the COVID-19 pandemic, describe the patient experience when transplant advocacy and engagement are optimized, and recommend opportunities for advocacy within three key areas: (1) including the patient voice in healthcare decisions and drug development, (2) access to the best evidence-based treatments and informed decision-making, and (3) present and future care innovations and policies.
There are many avenues for transplant and living donation advocacy and engagement at the patient, provider, family, system, community, and policy levels. Key recommendations include the following: (1) simplifying education to be health literate, written at the appropriate reading level, culturally sensitive, and available in multiple languages and across many delivery platforms, (2) inviting transplant patients and donors to the conversation through advisory panels, consensus conferences, and new mediums like digital storytelling and patient-reported outcomes (PROs), (3) training all members of the health team to understand their role as advocates, and (4) advancing policies and programs that support the financial neutrality of living donation, and support recipients with the cost of immunosuppressive drugs. Key recommendations specific to the COVID-19 pandemic include providing up-to-date, health literate, concise information about preventing COVID-19 and accessing care including telehealth.
Enhancing advocacy and engagement for transplant patients and donors along the pre-to-post transplant/donation continuum can improve clinical outcomes and quality of life generally, and more so, in light of the COVID-19 pandemic.
界定现代移植和活体捐赠护理中的患者宣传与参与，特别是鉴于新冠疫情，描述移植宣传与参与得到优化时的患者体验，并在三个关键领域推荐宣传机会：（1）在医疗决策和药物研发中纳入患者声音；（2）获得最佳循证治疗和知情决策；（3）当前及未来的护理创新与政策。
在患者、提供者、家庭、系统、社区和政策层面，有许多移植和活体捐赠宣传与参与的途径。关键建议如下：（1）简化教育内容，使其具备健康素养，以适当的阅读水平编写，具有文化敏感性，并提供多种语言版本且可通过多种传播平台获取；（2）通过咨询小组、共识会议以及数字故事讲述和患者报告结局（PROs）等新媒介，邀请移植患者和捐赠者参与讨论；（3）培训医疗团队的所有成员，使其理解自身作为倡导者的角色；（4）推进支持活体捐赠财务中立性的政策和项目，并为受者提供免疫抑制药物费用方面的支持。针对新冠疫情的关键建议包括提供有关预防新冠病毒和获得护理（包括远程医疗）的最新、具备健康素养且简洁的信息。
在移植前至移植/捐赠后整个连续过程中加强对移植患者和捐赠者的宣传与参与，总体上可改善临床结局和生活质量，鉴于新冠疫情，改善效果会更显著。
