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.

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

The National Cancer Institute (NCI) Symptom Management and Health-Related Quality of Life Steering Committee convened four working groups to recommend core sets of patient-reported outcomes to be routinely incorporated in clinical trials. The Prostate Cancer Working Group included physicians, researchers, and a patient advocate. The group's process included 1) a systematic literature review to determine the prevalence and severity of symptoms, 2) a multistakeholder meeting sponsored by the NCI to review the evidence and build consensus, and 3) a postmeeting expert panel synthesis of findings to finalize recommendations. Five domains were recommended for localized prostate cancer: urinary incontinence, urinary obstruction and irritation, bowel-related symptoms, sexual dysfunction, and hormonal symptoms. Four domains were recommended for advanced prostate cancer: pain, fatigue, mental well-being, and physical well-being. Additional domains for consideration include decisional regret, satisfaction with care, and anxiety related to prostate cancer. These recommendations have been endorsed by the NCI for implementation.

/pdf/recommended-patient-reported-core-set-of-symptoms-to-measure-1m1mw4alo9.pdf

Recommended Patient-Reported Core Set of Symptoms to Measure in Adult Cancer Treatment Trials

Cancer-related fatigue, insomnia, and cancer-related cognitive impairment are commonly experienced symptoms that share psychological and physical manifestations. One or more of these symptoms will affect nearly all patients at some point during their course of treatment or survivorship. These side effects are burdensome and reduce patients' quality of life well beyond their cancer diagnosis and associated care treatments. Cancer-related fatigue, insomnia, and cancer-related cognitive impairment are likely to have multiple etiologies that make it difficult to identify the most effective method to manage them. In this review, we summarized the information on cancer-related fatigue, insomnia, and cancer-related cognitive impairment incidence and prevalence among breast cancer patients and survivors as well as recent research findings on pharmaceutical, psychological, and exercise interventions that have shown effectiveness in the treatment of these side effects. Our review revealed that most current pharmaceutical interventions tend to ameliorate symptoms only temporarily without addressing the underlying causes. Exercise and behavioral interventions are consistently more effective at managing chronic symptoms and possibly address an underlying etiology. Future research is needed to investigate effective interventions that can be delivered directly in clinic to a large portion of patients and survivors.

Management of side effects during and post-treatment in breast cancer survivors.

Breast cancer survivors may experience pain, fatigue, or psychological distress as a result of the treatment. These symptoms may co-occur and form a cluster. However little is known about symptom clusters (SCs) in long-term breast cancer survivors. This study aimed to identify subgroups of breast cancer survivors with the SC of pain, fatigue, and psychological distress, and to examine sociodemographic and clinical characteristics associated with this SC. Data were obtained from a nationwide survey of breast cancer survivors (N = 834). Exhaustive enumeration of possible combination of the three binary variables (pain, fatigue, psychological distress) was conducted. They were identified using the recommended threshold for the Hospital Anxiety and Depression Scale, the Fatigue Questionnaire, and a score of one or more on a numeric rating scale for pain. The SC was defined to include all the three variables, all other combinations were defined as no SC. Logistic regression analyses were conducted to examine the association between sociodemographic and clinical variables and the SC. Of the 834 survivors, 13% had the SC. Younger age (OR 2.3, 95% CI 1.3–4.1, p = 0.003), lymphedema (OR 1.9, 95% CI 1.1–3.2, p = 0.02), working part-time (OR 2.9, 95% CI 1.6–5.3, p < 0.001), or being disabled (OR 4.1, 95% CI 2.2–7.8, p < 0.001) were all associated with the SC. Thirteen percent of the survivors experienced the SC. It appears that premenstrual women are at greater risk, than postmenopausal women. Having this SC might have an impact on the survivors’ ability to work.

/pdf/symptom-cluster-of-pain-fatigue-and-psychological-distress-21tpxfr9ww.pdf

Symptom cluster of pain, fatigue, and psychological distress in breast cancer survivors: prevalence and characteristics

https://escholarship.org/content/qt64v9t6nj/qt64v9t6nj.pdf?t=ptaixk

Stability of Symptom Clusters in Patients With Lung Cancer Receiving Chemotherapy

The aim of this article is to present a review reporting empirically determined symptom clusters in breast cancer patients. We conducted a literature search on symptom clusters in breast cancer patients using PubMed, MEDLINE, EMBASE and CINAHL. Studies examining the presence of predetermined clusters were excluded. The five relevant studies identified were published between 2005 and 2009. The five studies differed from each other by statistical methodology, by the number of symptom clusters produced and by the symptoms comprising the clusters. Symptom clusters extracted between the five studies varied from one to four, while the number of symptoms in a cluster ranged from two to five. One study examining symptom clusters between different patient groups and a second study examining clusters across a time trajectory had certain reproducible clusters comprising similar symptoms. There were no clusters across different studies that contained the same symptoms, although the single symptom of fatigue was present in a cluster in all five studies and depression/psychological distress was noted in four of the studies. Nausea and appetite were the only two symptoms that associated together across three of the five studies; however, they were not the only two symptoms in those clusters. Methodological disparities include different patient populations between and within studies, different statistical methods, varying assessment tools and time points, with the majority of studies employing more than one symptom tool. Although there were common symptoms assessed across the five studies, no common symptom clusters could be derived from these reports. This lack of commonality may result from the disparities in subpopulations of patients, assessment tools, and analytical and methodological approaches. As symptom cluster research continues to develop towards a clearer consensus on guidelines, the findings of symptom clusters may provide clinically valuable information regarding diagnosis, prognostication, prioritizing and managing symptoms in breast cancer patients.

A literature review of symptom clusters in patients with breast cancer.

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A literature review of symptom clusters in patients with breast cancer.