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Paul B. Jacobsen

Psychosocial Care of Cancer Patients A recent Institute of Medicine (IOM) report, “Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs,” summarized the current status of efforts to provide psychosocial care for people with cancer. 1 Among the report's main conclusions was that, despite evidence of the effectiveness of psychosocial services, many patients who could benefit from this type of care do not receive the help they need. According to the report, failure to address these problems causes needless patient and family suffering, obstructs quality health care, and can potentially affect the course of disease. The reasons for this failure are many, and include the tendency of oncology care providers to underestimate distress in patients 2 and not link patients to appropriate services when needs are identified. 3 To address these problems, the report recommended that provision of appropriate psychosocial services should be adopted as a standard of quality cancer care. 1 The report also identified a model for the effective delivery of psychosocial services that specifies implementation of processes for 1) facilitating effective communication between patients and care providers; 2) identifying patients' psychosocial needs; 3) designing and implementing plans that link patients with needed psychosocial services, coordinate their biomedical and psychosocial care, and engage and support them; and 4) systematically following up on, reevaluating, and adjusting the plan. 1 These recommendations are similar to those described in the Clinical Practice Guidelines in Oncology: Distress Management first issued by the NCCN in 1999 4 and updated annually. 5 These guidelines were developed based on the recognized...
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Paul B. Jacobsen and Sean Ransom

Up to half of all adults with cancer experience clinically significant psychological distress and much of this distress goes unrecognized and untreated. As part of an effort to improve the care of cancer patients, the National Comprehensive Cancer Network (NCCN) has developed clinical practice guidelines for distress management that include recommendations about the evaluation and treatment of distress. These authors conducted a study to evaluate the implementation of these distress management guidelines by NCCN member institutions. The NCCN member institutions that treat adults were asked in April and May 2005 to describe their distress management practices, and 15 (83%) provided responses. Of these, 8 (53%) conduct routine distress screening for at least some patient groups, with 4 additional institutions (27%) pilot-testing screening strategies. However, only 20% of surveyed member institutions screened all patients as the guidelines recommend. In addition, whether institutions that conduct routine distress screening do so through standardized assessment methods is unclear, because 37.5% of institutions that conduct screening rely only on interviews to identify distressed patients. Findings suggest that most institutions consider screening patients' mental health concerns important and worthwhile, but that greater implementation of guideline recommendations is needed.

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Kristine A. Donovan and Paul B. Jacobsen

A 2005 survey of NCCN Member Institutions was among the first studies to evaluate the extent to which key elements of the NCCN Clinical Practice Guidelines in Oncology for Distress Management were being implemented as part of routine clinical practice. This study seeks to characterize current implementation of the guidelines by NCCN Member Institutions 7 years after the original study. Institutional representatives appointed to the NCCN Distress Management Panel were asked to complete an online survey in June 2012. The survey was similar to the 2005 survey, except that it solicited additional details about screening procedures. The survey was completed by representatives from 20 of 22 NCCN Member Institutions (91%). (Note: In this calculation, 1 consortium cancer cancer was counted as 2 NCCN Member Institutions.) Responses indicate that routine screening for distress is being conducted at 70% of institutions, with 25% screening inpatients and 60% screening outpatients. Among institutions screening outpatients, 50% screen all outpatients and 50% screen only certain subgroups of outpatients. In terms of method, 85% of institutions conducting screening use a patient self-report measure either alone or in combination with an interview; the Distress Thermometer is used at 59% of institutions that use a self-report measure. Findings show modest progress since 2005 in implementing guideline recommendations regarding distress screening, with a 7% increase in institutions conducting any routine screening and a 10% increase in institutions screening all outpatients routinely. Greater progress is evident in the use of self-report measures as part of screening, with a 23% increase in their use alone or in combination with an interview.

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Zeeshan Butt, Sarah K. Rosenbloom, Amy P. Abernethy, Jennifer L. Beaumont, Diane Paul, Debra Hampton, Paul B. Jacobsen, Karen L. Syrjala, Jamie H. Von Roenn and David Cella

Cancer fatigue has been defined and described as an important problem. However, few studies have assessed the relative importance of fatigue compared with other patient symptoms and concerns. To explore this issue, the authors surveyed 534 patients and 91 physician experts from 5 NCCN member institutions and community support agencies. Specifically, they asked patients with advanced bladder, brain, breast, colorectal, head and neck, hepatobiliary/pancreatic, kidney, lung, ovarian, or prostate cancer or lymphoma about their “most important symptoms or concerns to monitor.” Across the entire sample, and individually for patients with 9 cancer types, fatigue emerged as the top-ranked symptom. Fatigue was also ranked most important among patients with 10 of 11 cancer types when asked to rank lists of common concerns. Patient fatigue ratings were most strongly associated with malaise (r = 0.50) and difficulties with activities of daily living, pain, and quality of life. Expert ratings of how much fatigue is attributable to disease versus treatment mostly suggested that both play an important role, with disease-related factors predominant in hepatobiliary and lung cancer, and treatment-related factors playing a stronger role in head and neck cancer.

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David Cella, Sarah K. Rosenbloom, Jennifer L. Beaumont, Susan E. Yount, Diane Paul, Debra Hampton, Amy P. Abernethy, Paul B. Jacobsen, Karen Syrjala and Jamie H. Von Roenn

Recent guidance from the FDA discusses patient-reported outcomes as end points in clinical trials. Using methods consistent with this guidance, the authors developed symptom indexes for patients with advanced cancer. Input on the most important symptoms was obtained from 533 patients recruited from NCCN Member Institutions and 4 nonprofit social service organizations. Diagnoses included bladder, brain, breast, colorectal, head and neck, hepatobiliary/pancreatic, kidney, lung, ovarian, and prostate cancers and lymphoma. Physician experts in each of these diseases were also surveyed to differentiate symptoms that were predominantly disease-based from those that were predominantly treatment-induced. Results are evaluated alongside previously published indexes for 9 of these 11 advanced cancers that were created based on expert provider surveys, also implemented at NCCN Member Institutions. Final results are 11 symptom indexes that reflect the highest priorities of people affected by these 11 advanced cancers and the experienced perspective of the people who provide their medical treatment. Beyond the clinical value of such indexes, they may also contribute significantly to satisfying regulatory requirements for a standardized tool to evaluate drug efficacy with respect to symptomatology.

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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 and Lynne I. Wagner

OverviewFatigue is a common symptom in patients with cancer and is nearly universal in those undergoing cytotoxic chemotherapy, radiation therapy, bone marrow transplantation, or treatment with biologic response modifiers.1–10 The symptom is experienced by 70% to 100% of patients with cancer who undergo multi-modal treatments and dose–dense, dose-intense protocols.11 In patients with metastatic disease, the prevalence of cancer-related fatigue exceeds 75%. Cancer survivors report that fatigue is a disruptive symptom months or even years after treatment ends.12–21 The distinction between tiredness, fatigue, and exhaustion has not been made, despite conceptual differences.22,23 Patients perceive fatigue to be the most distressing symptom associated with cancer and its treatment, more distressing even than pain or nausea and vomiting, which, for most patients, can generally be managed with medications.24,25Fatigue in patients with cancer has been underreported, underdiagnosed, and undertreated. Persistent cancer-related fatigue affects quality of life (QOL), because patients become too tired to fully participate in the roles and activities that make their lives meaningful.16,26–28 Health care professionals have been challenged in their efforts to help patients manage this distressful symptom and remain as fully engaged in life as possible. Because of the successes in cancer treatment, health care professionals are now likely to see patients with prolonged states of fatigue related to the late effects of treatment. Disability-related issues are relevant and often challenging, especially for patients who are cured of their malignancy but experience continued fatigue.29 Despite biomedical literature documenting this entity, patients with cancer-related fatigue often have difficulty obtaining...
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Jimmie C. Holland, Barbara Andersen, William S. Breitbart, Bruce Compas, Moreen M. Dudley, Stewart Fleishman, Caryl D. Fulcher, Donna B. Greenberg, Carl B. Greiner, George F. Handzo, Laura Hoofring, Paul B. Jacobsen, Sara J. Knight, Kate Learson, Michael H. Levy, Matthew J. Loscalzo, Sharon Manne, Randi McAllister-Black, Michelle B. Riba, Kristin Roper, Alan D. Valentine, Lynne I. Wagner and Michael A. Zevon

OverviewIn the United States, a total of 1,479,350 new cancer cases and 562,340 deaths from cancer were estimated to occur in 2009.1 All patients experience some level of distress associated with the diagnosis and treatment of cancer at all stages of the disease. Surveys have found that 20% to 40% of patients with newly diagnosed and recurrent cancer show a significant level of distress.2 However, fewer than 10% are actually identified and referred for psychosocial help.3 Many cancer patients who are in need of psychosocial care are not able to get the help they need due to the under recognition of patient's psychological needs by the primary oncology team and lack of knowledge of community resources. The need is particularly acute in community oncology practices that have few to no psychosocial resources, and cancer care is often provided in short visits.4For many centuries, patients were not told their diagnosis of cancer because of the stigma attached to the disease. Since the 1970s, this situation has changed and patients are well aware of their diagnosis and treatment options. However, patients are reluctant to reveal emotional problems to the oncologist. The words psychological, psychiatric, and emotional are as stigmatizing as cancer. Psychological issues remain stigmatized even in the context of coping with cancer. Consequently, patients often do not tell their physicians about their distress and physicians do not inquire about the psychological concerns of their patients. Recognition of patients' distress has become more difficult as cancer care has shifted to the...
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Ann M. Berger, Kathi Mooney, Amy Alvarez-Perez, William S. Breitbart, Kristen M. Carpenter, David Cella, Charles Cleeland, Efrat Dotan, Mario A. Eisenberger, Carmen P. Escalante, Paul B. Jacobsen, Catherine Jankowski, Thomas LeBlanc, Jennifer A. Ligibel, Elizabeth Trice Loggers, Belinda Mandrell, Barbara A. Murphy, Oxana Palesh, William F. Pirl, Steven C. Plaxe, Michelle B. Riba, Hope S. Rugo, Carolina Salvador, Lynne I. Wagner, Nina D. Wagner-Johnston, Finly J. Zachariah, Mary Anne Bergman and Courtney Smith

Cancer-related fatigue is defined as a distressing, persistent, subjective sense of physical, emotional, and/or cognitive tiredness or exhaustion related to cancer or cancer treatment that is not proportional to recent activity and interferes with usual functioning. It is one of the most common side effects in patients with cancer. Fatigue has been shown to be a consequence of active treatment, but it may also persist into posttreatment periods. Furthermore, difficulties in end-of-life care can be compounded by fatigue. The NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) for Cancer-Related Fatigue provide guidance on screening for fatigue and recommendations for interventions based on the stage of treatment. Interventions may include education and counseling, general strategies for the management of fatigue, and specific nonpharmacologic and pharmacologic interventions. Fatigue is a frequently underreported complication in patients with cancer and, when reported, is responsible for reduced quality of life. Therefore, routine screening to identify fatigue is an important component in improving the quality of life for patients living with cancer.

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Jimmie C. Holland, Barbara Andersen, William S. Breitbart, Luke O. Buchmann, Bruce Compas, Teresa L. Deshields, Moreen M. Dudley, Stewart Fleishman, Caryl D. Fulcher, Donna B. Greenberg, Carl B. Greiner, George F. Handzo, Laura Hoofring, Charles Hoover, Paul B. Jacobsen, Elizabeth Kvale, Michael H. Levy, Matthew J. Loscalzo, Randi McAllister-Black, Karen Y. Mechanic, Oxana Palesh, Janice P. Pazar, Michelle B. Riba, Kristin Roper, Alan D. Valentine, Lynne I. Wagner, Michael A. Zevon, Nicole R. McMillian and Deborah A. Freedman-Cass

The integration of psychosocial care into the routine care of all patients with cancer is increasingly being recognized as the new standard of care. These NCCN Clinical Practice Guidelines in Oncology for Distress Management discuss the identification and treatment of psychosocial problems in patients with cancer. They are intended to assist oncology teams identify patients who require referral to psychosocial resources and to give oncology teams guidance on interventions for patients with mild distress to ensure that all patients with distress are recognized and treated.