Amplifying the Patient Voice: Key Priorities and Opportunities for Improved Transplant and Living Donor Advocacy and Outcomes During COVID-19 and Beyond.
Amplifying the Patient Voice: Key Priorities and Opportunities for Improved Transplant and Living Donor Advocacy and Outcomes During COVID-19 and Beyond.
复制标题
放大患者的声音：在 COVID-19 及之后改善移植和活体捐赠者宣传和成果的关键优先事项和机会。
DOI：
10.1007/s40472-020-00295-x
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发表时间：
2020
影响因子：
2.1
通讯作者：
Peipert,JohnD
中科院分区：
文献类型：
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作者：
Waterman,AmyD;Gleason,Jim;Lerminiaux,Louise;Wood,EmilyH;Berrios,Alexander;Meacham,LaurieA;Osuji,Anne;Pines,Rachyl;Peipert,JohnD
审查目的定义现代移植和活体捐献护理的患者倡导和参与，特别是在COVID-19大流行的情况下，描述优化移植倡导和参与时的患者体验，并在三个关键领域推荐倡导机会：（1）在医疗决策和药物开发中纳入患者的声音，（2）获得最佳循证治疗和知情决策，以及（3）现在和未来的护理创新和政策。最近的发现在患者、提供者、家庭、系统、社区和政策层面，移植和活体捐赠的倡导和参与有很多途径。主要建议包括：（1）简化教育，使其具有健康素养，以适当的阅读水平编写，具有文化敏感性，并以多种语言和多种交付平台提供，（2）通过咨询小组，共识会议和数字故事和患者报告结果（PRO）等新媒体邀请移植患者和捐赠者进行对话，（3）培训卫生团队的所有成员，使他们了解自己作为倡导者的角色，（4）推进支持活体捐赠财务中立的政策和计划，并支持接受免疫抑制药物的费用。针对COVID-19大流行的主要建议包括提供最新的、具有健康知识的简明信息，以预防COVID-19，并获得包括远程医疗在内的护理。总结沿着移植/捐赠前后加强对移植患者和捐赠者的宣传和参与，可以改善临床结果和生活质量，尤其是在COVID-19大流行的情况下。
Purpose of ReviewTo 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.Recent FindingsThere 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.SummaryEnhancing 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.