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

• 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
• Journal Title: JNCI: Journal of the National Cancer Institute
• Volume: Volume 109, Number 4
• Publisher: Oxford University Press (OUP): Policy B - Oxford Open Option D | 2017-04-01, Pages djw253-djw253
• Type of Work: Article | Final Publisher PDF
• Publisher DOI: http://doi.org/10.1093/jnci/djw253
• Subjects: Health Sciences, Nursing; Health Sciences, Oncology
• Keywords: Science & Technology; Life Sciences & Biomedicine; Oncology; QUALITY-OF-LIFE; OBSTRUCTIVE PULMONARY-DISEASE; BREAST-CANCER; HEART-FAILURE; LUNG-CANCER; SLEEP DISTURBANCE; CYTOKINE GENES; RADIATION-THERAPY; SEVERITY RATINGS; HEALTH-CARE

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.