title: Advancing Symptom Science Through Symptom Cluster Research: Expert Panel Proceedings and Recommendations.
abstract: 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.
authors.affiliation: 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).
authors.forename: Christine
authors.initials: C
authors.lastname: Miaskowski
authors.affiliation: 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).
authors.forename: Andrea
authors.initials: A
authors.lastname: Barsevick
authors.affiliation: 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).
authors.forename: Ann
authors.initials: A
authors.lastname: Berger
authors.affiliation: 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).
authors.forename: Rocco
authors.initials: R
authors.lastname: Casagrande
authors.affiliation: 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).
authors.forename: Patricia A
authors.initials: PA
authors.lastname: Grady
authors.affiliation: 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).
authors.forename: Paul
authors.initials: P
authors.lastname: Jacobsen
authors.affiliation: 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).
authors.forename: Jean
authors.initials: J
authors.lastname: Kutner
authors.affiliation: 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).
authors.forename: Donald
authors.initials: D
authors.lastname: Patrick
authors.affiliation: 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).
authors.forename: Lani
authors.initials: L
authors.lastname: Zimmerman
authors.affiliation: 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).
authors.forename: Canhua
authors.initials: C
authors.lastname: Xiao
authors.affiliation: 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).
authors.forename: Martha
authors.initials: M
authors.lastname: Matocha
authors.affiliation: 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).
authors.forename: Sue
authors.initials: S
authors.lastname: Marden
mesh_terms: D035843:Biomedical Research; D003226:Congresses as Topic; D005221:Fatigue / Q000209:etiology / Q000628:therapy; D006801:Humans; D019964:Mood Disorders / Q000209:etiology / Q000628:therapy; D009369:Neoplasms / Q000150:complications*; D010146:Pain / Q000209:etiology; D059408:Pain Management; D012107:Research Design; D012893:Sleep Wake Disorders / Q000209:etiology / Q000628:therapy; D063189:Symptom Assessment