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.Patients with chronic conditions, such as cancer and other rare diseases, experience an array of multiple co-occurring symptoms (eg, pain, fatigue, sleep disturbance). When these symptoms remain underdiagnosed and undertreated, they have a negative impact on patient-reported outcomes (PROs) including functional performance, cognitive status, and quality of life (QOL). A reduction in symptom burden in these patients has the potential to improve their capacity to live well over their entire lives. To achieve this goal, a transformation is needed in how multiple co-occurring symptoms are assessed and managed in order to improve patient outcomes and stimulate a reduction in health care utilization and costs. A strategic plan that advances REVIEW

Differences in symptom clusters identified using symptom occurrence rates versus severity ratings in patients with breast cancer undergoing chemotherapy

“…Rather than evaluate single symptoms, current research is focused on an evaluation of symptom clusters in oncology patients (Miaskowski, 2016; Miaskowski et al, 2007; Miaskowski et al, 2017). Symptom clusters are defined as “two or more symptoms that are related to each other, occur together, composed of stable groups of symptoms, are independent of other clusters and may reveal specific underlying concepts of symptoms” [p. 278] (Kim et al, 2005).…”

“…While research on symptom clusters in oncology patients is progressing (Miaskowski, 2016; Miaskowski et al, 2017), several important questions remain unanswered. One question is whether the number and types of symptom clusters differ depending on the dimensions used to create the clusters.…”

“…As noted above, one of the fundamental questions that remains unanswered in symptom clusters research is which dimension to use to create the symptom cluster (Miaskowski, 2016; Miaskowski et al, 2017). Given the paucity of research in this area, the purpose of this study, in a sample of patients with breast cancer who received CTX (n = 515), was to identify whether the number and types of symptom clusters differed based on whether symptom occurrence rates or severity ratings were used to create the clusters.…”

Differences in Symptom Clusters Identified Using Ratings of Symptom Occurrence vs. Severity in Lung Cancer Patients Receiving Chemotherapy

“…In two recent reviews, 20,21 one of the identified gaps in symptom clusters research is whether the number and types of symptom clusters are similar regardless of which dimension of the symptom experience is used to create the clusters. While this type of comparison was performed in studies of breast and prostate cancer patients at the end of radiation therapy (occurrence versus severity), 22 pediatric cancer patients during CTX (occurrence versus severity), 23 and women with breast cancer during CTX (severity versus distress), 24 the findings were inconsistent.…”

Cytokine Gene Polymorphisms Associated With Symptom Clusters in Oncology Patients Undergoing Radiation Therapy

“…2,3 As noted in two recent reviews, 4,5 while the science of symptom clusters research is advancing, a number of research gaps warrant careful consideration. Of note, one of the underlying hypotheses in symptom cluster research is that symptoms cluster together because they share a common biological or behavioral mechanism.…”