Preussler Jaime M, DeSalvo Anna M, Tweeten Ben, Klaphake June, Cody Meghann R, McGhee Paris M, Dawson Karla S, Schoeppner Katie, Auletta Jeffery J
CIBMTR® (Center for International Blood and Marrow Transplant Research), NMDP, Minneapolis, Minnesota, USA.
CIBMTR® (Center for International Blood and Marrow Transplant Research), NMDP, Minneapolis, Minnesota, USA.
Transplant Cell Ther. 2025 Jul;31(7):458.e1-458.e10. doi: 10.1016/j.jtct.2025.04.006. Epub 2025 Apr 12.
The NMDP-sponsored, PCORI (Patient Centered Outcomes Research Institute)-funded project, Reimagining Caregiving Together, Engagement to Address Caregiver Requirement Barriers, is a series of workshops aimed to convene and engage a diverse group of stakeholders to promote discussion of challenges and solutions to caregiver requirements and to develop a PCOR/comparative effectiveness research (CER) agenda to generate evidence on alternative post-allogeneic hematopoietic cell transplant (alloHCT) models to improve access to care. This paper reviews the proceedings from the first workshop and provides an overview of the workshop's efforts to begin to address caregiver requirement barriers. The first workshop, "Defining the Problem and Developing Key Messages" was held in-person in Minneapolis, MN, October 3-4, 2024. Discussion focused on caregiver requirements, identifying a vision for safe-post-alloHCT care and barriers to that vision as well as planning for communication and next steps. Pre- and post-surveys were conducted for evaluation. Survey results showed a significant decrease in the perception of the need for a 24/7 caregiver, reflecting the influence of shared discussion, understanding and problem solving. Materials from this workshop and continued engagement between this workshop and the second workshop in May 2025 will be used to develop a comprehensive strategy and research agenda to enable more patients to receive alloHCT who might currently be unable to do so due to caregiver barriers.
由NMDP（国家骨髓捐赠项目）发起、PCORI（患者为中心的结果研究协会）资助的项目“共同重新构想护理，参与解决护理者需求障碍”，是一系列研讨会，旨在召集并让不同的利益相关者参与进来，促进对护理者需求的挑战和解决方案的讨论，并制定一个PCOR（患者为中心的结果研究）/比较效果研究（CER）议程，以生成关于异基因造血细胞移植（alloHCT）替代模式的证据，从而改善护理服务的可及性。本文回顾了第一次研讨会的会议记录，并概述了该研讨会为开始解决护理者需求障碍所做的努力。第一次研讨会“定义问题并制定关键信息”于2024年10月3日至4日在明尼阿波利斯亲自举行。讨论集中在护理者需求、确定异基因造血细胞移植后安全护理的愿景以及实现该愿景的障碍，以及沟通规划和后续步骤。会前和会后都进行了调查以进行评估。调查结果显示，对全天候护理者需求的认知显著下降，这反映了共同讨论、理解和解决问题的影响。本次研讨会的材料以及本次研讨会与2025年5月的第二次研讨会之间的持续互动，将用于制定一项全面战略和研究议程，以使更多目前可能因护理者障碍而无法接受异基因造血细胞移植的患者能够接受移植。
