Hashmi Shahrukh K, Bredeson Christopher, Duarte Rafael F, Farnia Stephanie, Ferrey Susan, Fitzhugh Courtney, Flowers Mary E D, Gajewski James, Gastineau Dennis, Greenwald Melissa, Jagasia Madan, Martin Patricia, Rizzo J Douglas, Schmit-Pokorny Kimberly, Majhail Navneet S
Mayo Clinic, Rochester, Minnesota.
Ottawa Hospital Research Institute, University of Ottawa, Ottawa, Ontario, Canada.
Biol Blood Marrow Transplant. 2017 May;23(5):717-725. doi: 10.1016/j.bbmt.2016.09.025. Epub 2016 Oct 3.
Hematopoietic cell transplantation (HCT) survivors are at risk for development of late complications and require lifelong monitoring for screening and prevention of late effects. There is an increasing appreciation of the issues related to healthcare delivery and coverage faced by HCT survivors. The 2016 National Institutes of Health Blood and Marrow Transplant Late Effects Initiative included an international and broadly representative Healthcare Delivery Working Group that was tasked with identifying research gaps pertaining to healthcare delivery and to identify initiatives that may yield a better understanding of the long-term value and costs of care for HCT survivors. There is a paucity of literature in this area. Critical areas in need of research include pilot studies of novel and information technology supported models of care delivery and coverage for HCT survivors along with development and validation of instruments that capture patient-reported outcomes. Investment in infrastructure to support this research, such as linkage of databases including electronic health records and routine inclusion of endpoints that will inform analyses focused around care delivery and coverage, is required.
造血细胞移植（HCT）幸存者有发生晚期并发症的风险，需要终身监测以筛查和预防晚期效应。人们越来越认识到HCT幸存者在医疗服务提供和覆盖方面面临的问题。2016年美国国立卫生研究院血液和骨髓移植晚期效应倡议组织了一个具有国际代表性且广泛的医疗服务工作组，其任务是确定与医疗服务提供相关的研究空白，并确定可能有助于更好理解HCT幸存者长期护理价值和成本的举措。该领域的文献很少。需要研究的关键领域包括对HCT幸存者新型和信息技术支持的护理提供与覆盖模式的试点研究，以及开发和验证能够获取患者报告结果的工具。需要投资建设支持这项研究的基础设施，比如连接包括电子健康记录在内的数据库，并常规纳入能为围绕护理提供和覆盖的分析提供信息的终点指标。
