Advancing symptom science through symptom cluster research: Expert panel proceedings and recommendations

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.