Advancing Symptom Science Through Symptom Cluster Research: Expert Panel Proceedings and Recommendations

• Type of Material: Article
• Authors: Christine Miaskowski, University of California at San Francisco; Andrea Barsevick, Thomas Jefferson University; Ann Berger, University of Nebraska Medical Center; Rocco Casagrande, Gryphon Scientific; Patricia A. Grady, National Institute of Nursing Research; Paul Jacobsen, Moffitt Cancer Center and Research Institute; Jean Kutner, University of Colorado; Donald Patrick, University of Washington; Lani Zimmerman, University of Nebraska Medical Center; Canhua Xiao, Emory University; Martha Matocha, National Institute of Nursing Research; Sue Marden, National Institute of Nursing Research
• Language: English
• Date: 2017-04-01
• Publisher: Oxford University Press (OUP): Policy B - Oxford Open Option D
• Publication Version: Final Published Version
• Copyright Statement: Published by Oxford University Press 2017. This work is written by a US Government employee and is in the public domain in the US.
• Final Published Version (URL): http://dx.doi.org/10.1093/jnci/djw253
• Title of Journal or Parent Work: JNCI: Journal of the National Cancer Institute
• ISSN: 0027-8874
• Volume: 109
• Issue: 4
• Start Page: djw253
• End Page: djw253
• Keywords: LUNG-CANCER; Oncology; RADIATION-THERAPY; BREAST-CANCER; Life Sciences & Biomedicine; HEART-FAILURE; CYTOKINE GENES; SEVERITY RATINGS; HEALTH-CARE; OBSTRUCTIVE PULMONARY-DISEASE; Science & Technology; SLEEP DISTURBANCE; QUALITY-OF-LIFE
• Research Categories: Health Sciences, Nursing; Health Sciences, Oncology

Abstract

An overview of proceedings, findings, and recommendations fromthe workshop on "Advancing SymptomScience Through SymptomCluster 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 symptomclusters in chronic conditions including cancer and other rare diseases. An interdisciplinary working group fromthe 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 symptomclusters, priority symptomclusters and underlyingmechanisms, 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. Themajority of findings in each area were from studies of oncology patients. However, increasing evidence suggests that symptomclusters occur in patients with other chronic conditions (eg, pulmonary, cardiac, and end-stage renal disease). Nonetheless, symptomcluster 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" symptomexists that triggers other symptoms in the cluster is needed. Also, research aimed at identifying themechanisms that underlie symptom clusters is essential to developing targeted interventions.