Miaskowski Christine, Barsevick Andrea, Berger Ann, Casagrande Rocco, Grady Patricia A, Jacobsen Paul, Kutner Jean, Patrick Donald, Zimmerman Lani, Xiao Canhua, Matocha Martha, Marden Sue
Affiliations of authors: School of Nursing, University of California, San Francisco, San Francisco, CA (CM); College of Medicine, Thomas Jefferson University, Philadelphia, PA (ABa); University of Nebraska Medical Center, Center for Nursing Science-Omaha Division, Omaha, NE (ABe); Gryphon Scientific, Takoma Park, MD (RC); National Institute of Nursing Research, Bethesda, MD (PAG, MM, SM); Moffitt Cancer Center and Research Institute, Tampa, FL (PJ); School of Medicine, University of Colorado, Aurora, CO (JK); School of Public Health and Community Medicine, University of Washington, Seattle, WA (DP); University of Nebraska Medical Center, College of Nursing-Lincoln Division, Lincoln, NE (LZ); School of Nursing, Emory University, Atlanta, GA (CX).
J Natl Cancer Inst. 2017 Jan 24;109(4). doi: 10.1093/jnci/djw253. Print 2017 Apr.
An overview of proceedings, findings, and recommendations from the workshop on "Advancing Symptom Science Through Symptom Cluster Research" sponsored by the National Institute of Nursing Research (NINR) and the Office of Rare Diseases Research, National Center for Advancing Translational Sciences, is presented. This workshop engaged an expert panel in an evidenced-based discussion regarding the state of the science of symptom clusters in chronic conditions including cancer and other rare diseases. An interdisciplinary working group from the extramural research community representing nursing, medicine, oncology, psychology, and bioinformatics was convened at the National Institutes of Health. Based on expertise, members were divided into teams to address key areas: defining characteristics of symptom clusters, priority symptom clusters and underlying mechanisms, measurement issues, targeted interventions, and new analytic strategies. For each area, the evidence was synthesized, limitations and gaps identified, and recommendations for future research delineated. The majority of findings in each area were from studies of oncology patients. However, increasing evidence suggests that symptom clusters occur in patients with other chronic conditions (eg, pulmonary, cardiac, and end-stage renal disease). Nonetheless, symptom cluster research is extremely limited and scientists are just beginning to understand how to investigate symptom clusters by developing frameworks and new methods and approaches. With a focus on personalized care, an understanding of individual susceptibility to symptoms and whether a "driving" symptom exists that triggers other symptoms in the cluster is needed. Also, research aimed at identifying the mechanisms that underlie symptom clusters is essential to developing targeted interventions.
本文介绍了由美国国立护理研究机构（NINR）以及美国国立转化医学推进中心罕见病研究办公室主办的“通过症状群研究推进症状科学”研讨会的会议议程、研究结果和建议。本次研讨会邀请了一个专家小组，就包括癌症和其他罕见病在内的慢性病症状群科学现状进行了基于证据的讨论。来自国立卫生研究院外部研究社区的一个跨学科工作组，代表护理、医学、肿瘤学、心理学和生物信息学领域，齐聚一堂。基于专业知识，成员们被分成小组，以探讨关键领域：定义症状群的特征、优先症状群及其潜在机制、测量问题、靶向干预措施以及新的分析策略。针对每个领域，综合了现有证据，识别了局限性和差距，并描绘了未来研究的建议。每个领域的大多数研究结果都来自肿瘤患者的研究。然而，越来越多的证据表明，症状群也出现在其他慢性病患者中（如肺部、心脏和终末期肾病患者）。尽管如此，症状群研究极为有限，科学家们才刚刚开始了解如何通过开发框架以及新方法和途径来研究症状群。为了专注于个性化护理，需要了解个体对症状的易感性，以及是否存在引发症状群中其他症状的“驱动”症状。此外，旨在确定症状群潜在机制的研究对于开发靶向干预措施至关重要。
