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ABSTRACT: BACKGROUND:: Comparing subgroups with different patterns of change in symptom intensity would assist in sorting out individuals at risk for more severe symptoms and worse functional outcomes. OBJECTIVES:: The objectives of this study were to identify and compare subgroups of breast cancer patients with different patterns of change in a psychoneurological symptom cluster intensity across the treatment trajectory. METHODS:: This secondary analysis used the data from 160 breast cancer patients undergoing chemotherapy or radiation treatment. Psychoneurological symptom cluster intensity was a composite score of 5 symptoms (depressed mood, cognitive disturbance, fatigue, insomnia, and pain) in a psychoneurological cluster at each of 3 time points (ie, at baseline and at 2 follow-ups after chemotherapy or radiation treatment). RESULTS:: Five distinct subgroups representing different patterns of psychoneurological symptom cluster intensity during breast cancer treatment were identified: the gradually increasing pattern subgroup (group 1), the constantly low pattern subgroup (group 2), the start low with dramatic increase and decrease pattern subgroup (group 3), the constantly high pattern subgroup (group 4), and the start high with dramatic decrease and leveling pattern subgroup (group 5). Patients without previous cancer treatment experience, with higher level of education, treated with chemotherapy, and/or with more limitations at the baseline were more likely to follow the pattern group 4. Patients in group 4 had the most serious functional limitations measured at the second follow-up time point. CONCLUSION:: The results suggest the need to evaluate interventions for specific subgroups and to examine the causal mechanisms underlying a psychoneurological symptom cluster. IMPLICATION:: Clinicians should consider these diverse symptom experiences for assessment/management.
Cancer nursing 02/2013; · 1.88 Impact Factor
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ABSTRACT: This study reports a randomized clinical trial evaluating the efficacy of an intervention to prepare individuals to communicate BRCA1/BRCA2 results to family members. Women aged 18 years and older, who had genetic testing, and who had adult first-degree relatives, were randomly assigned to a communication skills-building intervention or a wellness control session. Primary outcomes were the percentage of probands sharing test results, and the level of distress associated with sharing. The ability of the theory of planned behavior variables to predict the outcomes was explored. Four hundred twenty-two women were enrolled in the study, 219 (intervention) and 203 (control). Data from 137 in the intervention group and 112 in the control group were analyzed. Two hundred forty-nine probands shared test results with 838 relatives (80.1 %). There were no significant differences between study groups in the primary outcomes. Combining data from both arms revealed that perceived control and specific social influence were associated with sharing. Probands were more likely to share genetic test results with their children, female relatives and relatives who they perceived had a favorable opinion about learning the results. The communication skills intervention did not impact sharing of test results. The proband's perception of her relative's opinion of genetic testing and her sense of control in relaying this information influenced sharing. Communication of test results is selective, with male relatives and parents less likely to be informed. Prevalent psychosocial factors play a role in the communication of genetic test results within families.
Familial Cancer 02/2013; · 1.30 Impact Factor
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ABSTRACT: : A symptom cluster is a group of symptoms that occur together and are interrelated. The clinical implication of symptom cluster research is to use the clustering patterns of symptoms to understand the mechanisms for these symptoms and develop management strategies targeted at multiple symptoms.
: The purposes of this review were to summarize the evidence for a psychoneurological symptom cluster in cancer patients, to provide information regarding the underlying biological mechanisms for each of the psychoneurological symptoms within the cluster, and to propose possible common biological pathways that may underlie this cluster.
: A systematic review of the literature was conducted.
: Empirical evidence exists to support a cluster of psychoneurological symptoms (ie, depressive symptoms, cognitive disturbance, fatigue, sleep disturbance, pain). At a molecular level, common biological pathways (ie, proinflammatory cytokines, hypothalamic-pituitary-adrenal axis, and monoamine neurotransmission system) may underlie the development of symptoms within this cluster. Activation of proinflammatory cytokines is proposed as a first stage of mechanistic pathway. However, other biological factors, such as lowered estrogen or hemoglobin levels, may influence psychoneurological cluster.
: Additional studies are needed to confirm the roles of cytokines as well as other biological factors in the development of the psychoneurological cluster and to determine the biomarkers to identify the subgroups of cancer patients who are at greatest risk for this cluster.
: This information can be used by researchers and clinicians to guide the selection of symptom management strategies that are ideally targeted to the biological mechanisms that underlie this symptom cluster.
Cancer nursing 01/2012; 35(6):E1-E20. · 1.88 Impact Factor
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ABSTRACT: To investigate clinical subgroups using an empirically identified psychoneurologic symptom cluster (depressed mood, cognitive disturbance, fatigue, insomnia, and pain) and to examine the differences among subgroups in the selected demographic and clinical variables, as well as in patient outcome (i.e., functional performance).
Secondary analysis.
A university health science center in Salt Lake City, UT, and a National Cancer Institute-designated comprehensive cancer center in Philadelphia, PA.
282 patients with breast cancer undergoing chemotherapy or radiotherapy.
Cluster analyses were conducted to identify subgroups. Multinomial logistic regression and one-way analyses of variance were used to examine the differences among subgroups.
Depressed mood, cognitive disturbance, fatigue, insomnia, pain, and functional performance.
Patients were classified into four distinct subgroups based on their symptom cluster experience: all low symptom, high fatigue and low pain, high pain, and all high symptom. Such patient classification patterns were consistent across the treatment trajectory, although group memberships were inconsistent. After initiating treatment, two additional subgroups emerged: high depressed mood and cognitive disturbance, and high fatigue and insomnia. Subgroups differed in physical performance status at baseline, symptom burden, and treatment modality in a relatively consistent pattern across time points. Patients in the all-high-symptom subgroup experienced the most serious limitations in activities across all time points.
Patient subgroups exist that share the unique experience of psychoneurologic symptoms.
Findings are useful to determine who needs more intensive symptom management during cancer treatment. Future studies should examine whether specific symptom management strategies are more efficient for certain subgroups.
Oncology Nursing Forum 01/2012; 39(1):E20-30. · 1.91 Impact Factor
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ABSTRACT: To systematically review published qualitative reports of descriptions of fatigue by patients with cancer and how cancer-related fatigue (CF) affects their lives.
MEDLINE®, CANCERLIT®, Cochrane Database of Systematic Reviews, and the Cumulative Index to Nursing and Allied Health Literature.
Two researchers conducted independent reviews of 667 patient quotes found in 154 articles published from 1996-2009 to identify concepts and language used to describe CF.
CF is more intense than the tiredness patients recalled from before diagnosis or treatment. Published patient quotes fail to adjudicate whether CF should be approached as a single symptom or a more complex symptom cluster.
Systematic study of patients with different cancer types and stages is needed to identify effective, valid, and reliable self-reported assessments of CF for clinical practice and trials.
Oncology Nursing Forum 05/2011; 38(3):E191-203. · 1.91 Impact Factor
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Joanne E Mortimer, Andrea M Barsevick,
Charles L Bennett,
Ann M Berger,
Charles Cleeland,
Shannon R DeVader,
Carmen Escalante,
Jeffrey Gilreath,
Arti Hurria,
Tito R Mendoza,
Hope S Rugo
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ABSTRACT: NCCN convened a committee of experts to make recommendations for future studies of cancer-related fatigue (CRF). The committee reviewed the current data on the incidence, clinical measurement, and treatment of CRF. The assessment of fatigue is largely derived from self-report questionnaires that address the symptom of fatigue, and do not correlate the presence of fatigue with change in physical activity. The committee developed a self-report questionnaire, NCCN Fatigue and Contributing Factors Inventory, which incorporates assessments of fatigue, pain, difficulty sleeping, distress, physical activity, and concurrent medications. A clinical research study using this measure in conjunction with the NCCN Breast Cancer Outcomes Database Project is planned. The committee noted a strong interaction among fatigue, pain, difficulty sleeping, and distress and recommended that future clinical research address these interactions.
Journal of the National Comprehensive Cancer Network: JNCCN 12/2010; 8(12):1331-9. · 4.41 Impact Factor
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Ann M Berger,
Amy Pickar Abernethy,
Ashley Atkinson, Andrea M Barsevick,
William S Breitbart,
David Cella,
Bernadine Cimprich,
Charles Cleeland,
Mario A Eisenberger,
Carmen P Escalante,
Paul B Jacobsen,
Phyllis Kaldor,
Jennifer A Ligibel,
Barbara A Murphy,
Tracey O'Connor,
William F Pirl,
Eve Rodler,
Hope S Rugo,
Jay Thomas,
Lynne I Wagner
Journal of the National Comprehensive Cancer Network: JNCCN 08/2010; 8(8):904-31. · 4.41 Impact Factor
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ABSTRACT: Development of pharmacological and behavioral interventions for cancer-related fatigue (CRF) requires adequate measures of this symptom. A guidance document from the Food and Drug Administration offers criteria for the formulation and evaluation of patient-reported outcome measures used in clinical trials to support drug or device labeling claims.
An independent working group, ASCPRO (Assessing Symptoms of Cancer Using Patient-Reported Outcomes), has begun developing recommendations for the measurement of symptoms in oncology clinical trials. The recommendations of the Fatigue Task Force for measurement of CRF are presented here.
There was consensus that CRF could be measured effectively in clinical trials as the sensation of fatigue or tiredness, impact of fatigue/tiredness on usual functioning, or as both sensation and impact. The ASCPRO Fatigue Task Force constructed a definition and conceptual model to guide the measurement of CRF. ASCPRO recommendations do not endorse a specific fatigue measure but clarify how to evaluate and implement fatigue assessments in clinical studies. The selection of a CRF measure should be tailored to the goals of the research. Measurement issues related to various research environments were also discussed.
There exist in the literature good measures of CRF for clinical trials, with strong evidence of clarity and comprehensibility to patients, content and construct validity, reliability, and sensitivity to change in conditions in which one would expect them to change (assay sensitivity), and sufficient evidence to establish guides for interpreting changes in scores. Direction for future research is discussed.
Journal of pain and symptom management 06/2010; 39(6):1086-99. · 2.42 Impact Factor
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ABSTRACT: With advances in treatment, colorectal cancer (CRC) is being transformed from a deadly disease into an illness that is increasingly curable. With this transformation has come increased interest in the unique problems, risks, needs, and concerns of survivors who have completed treatment and are cancer-free. Research has shown that physical and mental quality of life for CRC survivors was inferior compared with age-matched individuals without cancer. Although issues and symptoms were most prominent during the first 3 years, long-term effects of treatment can persist and include fatigue, sleep difficulty, fear of recurrence, anxiety, depression, negative body image, sensory neuropathy, gastrointestinal problems, urinary incontinence, and sexual dysfunction. The unique challenges and issues of CRC survivors can and should be addressed by health care providers and the research community to ensure effective interventions and models of care to manage these problems. This article discusses what is known about the long-term effects of CRC treatment on quality of life, the care of survivors, and existing models of survivorship care.
Journal of the National Comprehensive Cancer Network: JNCCN 09/2009; 7(8):883-93; quiz 894. · 4.41 Impact Factor
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Mirjam A G Sprangers,
Jeff A Sloan,
Ruut Veenhoven,
Charles S Cleeland,
Michele Y Halyard,
Amy P Abertnethy,
Frank Baas, Andrea M Barsevick,
Meike Bartels,
Dorret I Boomsma, [......],
Benjamin Movsas,
Cornelis J F Van Noorden,
Donald L Patrick,
Nancy L Pedersen,
Mary E Ropka,
Quiling Shi,
Gen Shinozaki,
Jasvinder A Singh,
Ping Yang,
Ailko H Zwinderman
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ABSTRACT: To our knowledge, no comprehensive, interdisciplinary initiatives have been taken to examine the role of genetic variants on patient-reported quality-of-life outcomes. The overall objective of this paper is to describe the establishment of an international and interdisciplinary consortium, the GENEQOL Consortium, which intends to investigate the genetic disposition of patient-reported quality-of-life outcomes. We have identified five primary patient-reported quality-of-life outcomes as initial targets: negative psychological affect, positive psychological affect, self-rated physical health, pain, and fatigue. The first tangible objective of the GENEQOL Consortium is to develop a list of potential biological pathways, genes and genetic variants involved in these quality-of-life outcomes, by reviewing current genetic knowledge. The second objective is to design a research agenda to investigate and validate those genes and genetic variants of patient-reported quality-of-life outcomes, by creating large datasets. During its first meeting, the Consortium has discussed draft summary documents addressing these questions for each patient-reported quality-of-life outcome. A summary of the primary pathways and robust findings of the genetic variants involved is presented here. The research agenda outlines possible research objectives and approaches to examine these and new quality-of-life domains. Intriguing questions arising from this endeavor are discussed. Insight into the genetic versus environmental components of patient-reported quality-of-life outcomes will ultimately allow us to explore new pathways for improving patient care. If we can identify patients who are susceptible to poor quality of life, we will be able to better target specific clinical interventions to enhance their quality of life and treatment outcomes.
Twin Research and Human Genetics 07/2009; 12(3):301-11. · 1.70 Impact Factor
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ABSTRACT: To examine the influence of selected demographic and clinical variables on the intensity of symptoms in two previously identified symptom clusters (psychoneurological and upper gastrointestinal) across the treatment trajectory for breast cancer.
A secondary analysis was conducted with a sample of 282 female breast-cancer patients who were receiving chemotherapy or radiation therapy in two American cancer centers. Data were collected three times across the treatment trajectory: baseline (before chemotherapy or radiation treatment) and two follow-up times after treatment initiation.
Multiple regression analyses were done at each time point to examine the influence of selected demographic and clinical variables on the intensity of symptoms in each cluster.
Baseline physical performance status was a consistent predictor of symptom intensity in the psychoneurological cluster across time whereas age and treatment modality were consistent predictors of symptom intensity in the upper gastrointestinal cluster. Poor physical performance at baseline predicted more intense psychoneurological symptoms. Younger women and women undergoing chemotherapy experienced more intense gastrointestinal symptoms. In addition, at the second follow-up treatment modality also influenced intensity of symptoms in the psychoneurological cluster and race and baseline physical performance status also influenced the intensity of symptoms in the upper gastrointestinal cluster.
Clinicians can anticipate that younger patients, patients with poor baseline physical performance status, and patients who receive chemotherapy will have more intense treatment-related gastrointestinal and psychoneurological symptoms during adjuvant breast cancer therapy. Further research is needed to determine whether collective management for symptoms in a cluster may be beneficial.
Clinicians can use findings from the present study to identify patients who need greater attention to symptom assessment and management, including anticipatory counseling of patients and families.
Journal of Nursing Scholarship 02/2009; 41(2):158-65. · 1.49 Impact Factor
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ABSTRACT: Guidelines for the management of cancer-related fatigue (CRF) emphasize evidence-based strategies for reducing this common symptom in patients with cancer. Exercise has the largest body of data supporting its benefits in reducing CRF. Patient education and counseling also are considered integral to effective CRF management. Additional interventions can be pharmacologic or nonpharmacologic, although a combination of approaches may be employed. Several factors known to be associated with CRF may be particularly amenable to treatment.
Clinical journal of oncology nursing 10/2008; 12(5 Suppl):21-5. · 0.73 Impact Factor
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ABSTRACT: This study investigated treatment-related symptom clusters and the influence of selected demographic/clinical variables on symptom clustering in breast cancer patients across a treatment trajectory. A secondary analysis of 282 breast cancer patients receiving chemotherapy or radiotherapy was done to determine the clustering of oncologic treatment-related symptoms at selected time points of treatment. Two distinct clusters were identified: a psychoneurological cluster and an upper gastrointestinal cluster. The clustering of symptoms was generally stable across the treatment trajectory. The clustering, however, was weaker when the time lapse after the completion of treatment became longer. Demographic and clinical variables did not significantly influence symptom clustering. Psychoneurological symptoms had a tendency to occur together across the treatment trajectory, as did upper gastrointestinal symptoms. Effective symptom assessment/management strategies need to take into account this co-occurrence of symptoms. The findings from this study underscore the need for further investigation of the common biological basis of symptoms to attain more effective management of multiple symptoms.
Journal of pain and symptom management 09/2008; 36(5):468-79. · 2.42 Impact Factor
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ABSTRACT: Guided by the theory of planned behavior, this analysis explores the communication skills of women who had genetic testing for BRCA1 and BRCA2. The key outcome was intention to tell test results to adult first-degree relatives. The theory predicts that global and specific attitudes, global and specific perceived social norms, and perceived control will influence the communication of genetic test results. A logistic regression model revealed that global attitude (p < .05), specific social influence (p < .01), and perceived control (p < .05) were significant predictors of intention to tell. When gender and generation of relatives were added to the regression, participants were more likely to convey genetic test results to female than to male relatives (p < .05) and were also more likely to communicate test results to children (p < .01) or siblings (p < .05) than to parents. However, this association depended on knowing the relative's opinion of genetic testing. Intention to tell was lowest among participants who did not know their relative's opinion. These results extend the theory of planned behavior by showing that gender and generation influence intention when the relative's opinion is unknown.
Journal of Family Psychology 05/2008; 22(2):303-12. · 1.66 Impact Factor
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Journal of the National Comprehensive Cancer Network: JNCCN 12/2007; 5(10):1054-78. · 4.41 Impact Factor
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Andrea M Barsevick
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ABSTRACT: To provide an integration and synthesis of literature on the definition and importance of the symptom cluster, theoretical frameworks to explain it, analysis strategies to identify it, interventions to alleviate it, and suggestions for future research.
A literature review from 1995-2007 was conducted using MEDLINE. Clinical guidelines, descriptive research, intervention studies of multiple symptoms, and theoretical and conceptual articles were examined. Articles were reviewed if at least two of the four symptoms of interest were examined in relation to one or more other symptoms. Conceptual models were included if they explained or allowed for the notion of a symptom cluster.
Four symptoms were examined as a candidate symptom cluster for this analysis: fatigue, insomnia, pain, and depression. Symptom clusters were identified by expert opinion, group comparisons, shared variance among symptoms (including factor analysis and mediation analysis), identification of subgroups, influence of symptoms on patient outcomes, or the identification of a common underlying mechanism. Regardless of the method chosen for identifying a symptom cluster, the substantial evidence showed that various combinations of the target symptoms formed a symptom cluster.
Although the findings suggest that fatigue, insomnia, pain, and depression constitute a viable cluster for further study, more research is needed to define the cluster and describe its underlying mechanisms. Addressing multiple symptoms is beneficial in reducing negative patient outcomes; however, more work needs to be done to understand the efficacy of intervention for symptom clusters.
When conducting symptom assessment, healthcare providers should address the four symptoms (fatigue, insomnia, pain, and depression) targeted in this review because evidence of clustering exists. Guidelines provided by the National Comprehensive Cancer Network for fatigue and distress provide algorithms and decision trees for assessment and management.
Oncology Nursing Forum 10/2007; 34(5):971-80. · 1.91 Impact Factor
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Andrea M Barsevick
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ABSTRACT: To define the concept of a symptom cluster, evaluate the evidence base in support of it, and address research and clinical implications.
Review of descriptive research that examined fatigue, insomnia, pain, or depression in relation to other symptoms.
More investigation is needed. There is evidence of overlapping variance indicative of a relationship between or among symptoms. Few studies have addressed the outcomes of symptom clusters. There is limited evidence of symptom concurrence or a common biological pathway for clustered symptoms.
Consideration should be given to assessment and management of fatigue, insomnia, pain, and depression as potential "sentinel symptoms" that could affect patient outcomes.
Seminars in Oncology Nursing 06/2007; 23(2):89-98.
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ABSTRACT: Cancer patients may experience multiple concurrent symptoms caused by the cancer, cancer treatment, or their combination. The complex relationships between and among symptoms, as well as the clinical antecedents and consequences, have not been well described. This paper examines the literature on cancer symptom clusters focusing on the conceptualization, design, measurement, and analytic issues. The investigation of symptom clustering is in an early stage of testing empirically whether the characteristics defined in the conceptual definition can be observed in cancer patients. Decisions related to study design include sample selection, the timing of symptom measures, and the characteristics of symptom interventions. For self-report symptom measures, decisions include symptom dimensions to evaluate, methods of scaling symptoms, and the time frame of responses. Analytic decisions may focus on the application of factor analysis, cluster analysis, and path models. Studying the complex symptoms of oncology patients will yield increased understanding of the patterns of association, interaction, and synergy of symptoms that produce specific clinical outcomes. It will also provide a scientific basis and new directions for clinical assessment and intervention.
Journal of Pain and Symptom Management 02/2006; 31(1):85-95. · 2.50 Impact Factor
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Ann M Berger,
Kathy P Parker,
Stacey Young-McCaughan,
Gail A Mallory, Andrea M Barsevick,
Susan L Beck,
Janet S Carpenter,
Patricia A Carter,
Lynne A Farr,
Pamela S Hinds,
Kathryn A Lee,
Christine Miaskowski,
Victoria Mock,
Judith K Payne,
Martica Hall
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ABSTRACT: To review the state of the science on sleep/wake disturbances in people with cancer and their caregivers.
Published articles, books and book chapters, conference proceedings, and MEDLINE, the Cumulative Index to Nursing and Allied Health Literature, PsycINFO, and the Cochrane Library computerized databases.
Scientists have initiated studies on the prevalence of sleep/wake disturbances and the etiology of sleep disturbances specific to cancer. Measurement has been limited by lack of clear definitions of sleep/wake variables, use of a variety of instruments, and inconsistent reporting of sleep parameters. Findings related to use of nonpharmacologic interventions were limited to 20 studies, and the quality of the evidence remains poor. Few pharmacologic approaches have been studied, and evidence for use of herbal and complementary supplements is almost nonexistent.
Current knowledge indicates that sleep/wake disturbances are prevalent in cancer populations. Few instruments have been validated in this population. Nonpharmacologic interventions show positive outcomes, but design issues and small samples limit generalizability. Little is known regarding use of pharmacologic and herbal and complementary supplements and potential adverse outcomes or interactions with cancer therapies.
All patients and caregivers need initial and ongoing screening for sleep/wake disturbances. When disturbed sleep/wakefulness is evident, further assessment and treatment are warranted. Nursing educational programs should include content regarding healthy and disrupted sleep/wake patterns. Research on sleep/wake disturbances in people with cancer should have high priority.
Oncology Nursing Forum 12/2005; 32(6):E98-126. · 1.91 Impact Factor
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ABSTRACT: The efficacy of energy conservation and activity management (ECAM) for fatigue reduction and maintenance of functional performance has never been evaluated in adults with cancer who are undergoing treatment.
A randomized clinical trial compared an ECAM intervention with a control intervention focused on nutrition. Individuals initiating chemotherapy, radiotherapy, or concurrent therapy for cancer were randomized to receive either the semistructured ECAM intervention (n = 200) or the control intervention (n = 196). Participants in each group participated in 3 telephone sessions with an oncology nurse during the first 5 weeks of treatment. Data on fatigue and limitation of functioning were obtained before cancer treatment and at two follow-up points that coincided with times of high fatigue for each type of treatment. The outcomes of interest included perception of fatigue and functional performance.
A repeated-measures analysis of covariance using the type of cancer treatment as a covariate revealed a significant study group-by-time interaction indicating that the ECAM group experienced a greater decrease in fatigue over time compared with the control group (F(2,544) = 4.5; P = 0.01). The intervention was not associated with changes in overall functional performance.
Individuals who received the ECAM intervention derived a modest but significant benefit from it. To achieve a more robust clinical benefit from the intervention, it may be necessary to manage other key symptoms in addition to fatigue. Research is needed to examine symptom clusters or combinations associated with negative outcomes as well as combination strategies for symptom management.
Cancer 04/2004; 100(6):1302-10. · 4.77 Impact Factor
