National Institutes of Health Hematopoietic Cell Transplantation Late Effects Initiative: The Patient-Centered Outcomes Working Group Report
National Institutes of Health Hematopoietic Cell Transplantation Late Effects Initiative: The Patient-Centered Outcomes Working Group Report
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DOI：
10.1016/j.bbmt.2016.09.011
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发表时间：
2017-04-01
影响因子：
4.3
通讯作者：
Syrjala, Karen L.
中科院分区：
文献类型：
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作者：
Bevans, Margaret;El-Jawahri, Areej;Syrjala, Karen L.
2015年，美国国立卫生研究院召集了六个工作组来解决造血干细胞移植幸存者迟发效应的研究需求和最佳实践。以患者为中心的结果工作组负责总结 HRQOL 证据基础，使用范围审查方法有效地调查了移植后 1 年多的成人和儿童 HCT 幸存者的大量文献。本文的目标是 (1) 总结当前描述幸存者中以患者为中心的结果的文献，包括受 HCT 影响的健康相关生活质量的各个方面，并描述为改善这些结果而测试的干预措施； (2) 突出有足够证据可以纳入标准实践的领域； (3) 解决限制该领域进展的方法问题； (4) 找出主要差距以指导未来的研究； (5) 明确优先研究建议。以患者为中心的结果在身体、心理、社会和环境领域以及治疗依从性和健康行为方面进行了总结。尽管很少有干预措施在长期 HCT 幸存者中进行过测试，但对改善结果的干预措施的有效性证据进行了评估。定义的方法学问题包括以患者为中心的结果测量的选择缺乏一致性，以及缺乏给药时间、频率和模式的标准。 HCT 生存护理的建议包括整合以患者为中心的结果的年度筛查、使用循证实践指南以及提供 HCT 后的治疗总结和生存护理计划。三项优先研究建议包括以下内容：（1）设计和测试剂量强度调制的风险针对性干预措施，以满足 HCT 幸存者的优先领域需求，包括性功能障碍、疲劳、睡眠中断、不遵守药物和推荐的医疗保健、包括身体活动不足和健康饮食在内的健康行为以及心理功能障碍，特别考虑采用新技术来帮助远离移植中心的 HCT 幸存者； (2) 设计基于共识的结果评估方法框架； (3) 评估和比较在 HCT 生存计划中整合以患者为中心的结果筛查和干预措施的现有实践。由爱思唯尔公司代表美国血液和骨髓移植协会出版。
In 2015, the National Institutes of Health convened six working groups to address the research needs and best practices for late effects of hematopoietic stem cell transplantation survivors. The Patient-Centered Outcomes Working Group, charged with summarizing the HRQOL evidence base, used a scoping review approach to efficiently survey the large body of literature in adult and pediatric HCT survivors over 1 year after transplantation. The goals of this paper are to (1) summarize the current literature describing patient-centered outcomes in survivors, including the various dimensions of health-related quality of life affected by HCT, and describe interventions tested to improve these outcomes; (2) highlight areas with sufficient evidence allowing for integration into standard practice; (3) address methodological issues that restrict progress in this field; (4) identify major gaps to guide future research; and (5) specify priority research recommendations. Patient-centered outcomes were summarized within physical, psychological, social, and environmental domains, as well as for adherence to treatment, and health behaviors. Interventions to improve outcomes were evaluated for evidence of efficacy, although few interventions have been tested in long-term HCT survivors. Methodologic issues defined included lack of consistency in the selection of patient-centered outcome measures, along with the absence of a standard for timing, frequency, and mode of administration. Recommendations for HCT survivorship care included integration of annual screening of patient-centered outcomes, use of evidence-based practice guidelines, and provision of treatment summaries and survivorship care plans after HCT. Three priority research recommendations included the following: (1) design and test risk-targeted interventions with dose-intensity modulation matching the needs of HCT survivors with priority domains, including sexual dysfunction, fatigue, sleep disruption, nonadherence to medications and recommended health care, health behaviors including physical inactivity and healthy eating, and psychological dysfunction, with particular consideration of novel technologies to reach HCT survivors distant from their transplantation centers; (2) design a consensus-based methodologic framework for outcomes evaluation; and (3) evaluate and compare existing practices for integrating patient-centered outcome screening and interventions across HCT survivorship programs.Published by Elsevier Inc. on behalf of the American Society for Blood and Marrow Transplantation.