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Implementing the Fatigue Guidelines at One NCCN Member Institution: Process and Outcomes

Tami Borneman, Barbara F. Piper, Virginia Chih-Yi Sun, Marianna Koczywas, Gwen Uman, and Betty Ferrell

Fatigue, despite being the most common and distressing symptom in cancer, is often unrelieved because of numerous patient, provider, and system barriers. The overall purpose of this 5-year prospective clinical trial is to translate the NCCN Cancer-Related Fatigue Clinical Practice Guidelines in Oncology and NCCN Adult Cancer Pain Clinical Practice Guidelines in Oncology into practice and develop a translational interventional model that can be replicated across settings. This article focuses on one NCCN member institution's experience related to the first phase of the NCCN Cancer-Related Fatigue Guidelines implementation, describing usual care compared with evidence-based guidelines. Phase 1 of this 3-phased clinical trial compared the usual care of fatigue with that administered according to the NCCN guidelines. Eligibility criteria included age 18 years or older; English-speaking; diagnosed with breast, lung, colon, or prostate cancer; and fatigue and/or pain ratings of 4 or more on a 0 to 10 screening scale. Research nurses screened all available subjects in a cancer center medical oncology clinic to identify those meeting these criteria. Instruments included the Piper Fatigue Scale, a Fatigue Barriers Scale, a Fatigue Knowledge Scale, and a Fatigue Chart Audit Tool. Descriptive and inferential statistics were used in data analysis. At baseline, 45 patients had fatigue only (≥ 4) and 24 had both fatigue and pain (≥ 4). This combined sample (N = 69) was predominantly Caucasian (65%), female (63%), an average of 60 years old, diagnosed with stage 3 or 4 breast cancer, and undergoing treatment (82%). The most common barriers noted were patients' belief that physicians would introduce the subject of fatigue if it was important (patient barrier); lack of fatigue documentation (professional barrier); and lack of supportive care referrals (system barrier). Findings showed several patient, professional, and system barriers that distinguish usual care from that recommended by the NCCN Cancer-Related Fatigue Guidelines. Phase 2, the intervention model, is designed to decrease these barriers and improve patient outcomes over time, and is in progress.

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First-Line Systemic Therapy Practice Patterns and Concordance With NCCN Guidelines for Patients Diagnosed With Metastatic NSCLC Treated at NCCN Institutions

Carrie Zornosa, Jonathan L. Vandergrift, Gregory P. Kalemkerian, David S. Ettinger, Michael S. Rabin, Mary Reid, Gregory A. Otterson, Marianna Koczywas, Thomas A. D'Amico, Joyce C. Niland, Rizvan Mamet, and Katherine M. Pisters

The NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) allow many systemic therapy options for patients with metastatic non–small cell lung cancer (NSCLC). This analysis uses the NCCN NSCLC Outcomes Database to report on first-line therapy practice patterns and concordance with NCCN Guidelines. The analysis was limited to patients diagnosed with metastatic NSCLC between September 2006 and November 2009 at 1 of 8 participating NCCN Member Institutions. Patient characteristics, regimens used, and guidelines concordance were analyzed. Institutional variation and changes in practice over time were also measured. A total of 1717 patients were included in the analysis. Of these, 1375 (80%) were treated with systemic therapy, most often in the form of a carboplatin-based doublet (51%) or carboplatin-based doublet with targeted therapy (17%). Overall, 76% of patients received care that was concordant with NCCN Guidelines. Among patients with good performance status (n = 167), the most common reasons for not receiving first-line therapy were that therapy was not recommended (39%) or death occurred before treatment (33%). The most common reason for receiving nonconcordant drug therapy was the administration of pemetrexed or erlotinib before its incorporation into the NCCN Guidelines for first-line therapy (53%). Most patients in this cohort received care that was concordant with NCCN Guidelines. The NSCLC Outcomes Database is a valuable resource for evaluating practice patterns and concordance with NCCN Guidelines among patients with NSCLC.

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Patient-Defined Goals and Preferences Among Adults With Advanced Neuroendocrine Tumors

Daneng Li, Can-Lan Sun, Heeyoung Kim, Christiana Crook, Ya-Han Zhang, Rebecca Allen, Richard Ballena, Shadman Hyder, Marianna Koczywas, Vincent Chung, Dean Lim, Vani Katheria, William Dale, and Gagandeep Singh

Background: Patient preferences (quantity vs quality of life; present vs future health) have not been investigated in patients with neuroendocrine tumors (NETs). The goal of this cross-sectional study was to evaluate patient values toward treatment goals and competing health outcomes among adults with NETs. Patients and Methods: Patients with well-differentiated, grade 1 or 2, advanced NETs starting a new systemic therapy completed 4 tools: (1) Health Outcomes Tool, which ranks the importance of 4 outcomes (survival, function/independence, freedom from pain, freedom from symptoms); (2) Attitude Scale, which identifies the extent to which patients agree with statements related to health outcomes; (3) Now versus Later Tool, which ranks the relative importance of quality of life (QoL) now versus 1 and 5 years from now; and (4) Prognosis and Treatment Perceptions Questionnaire, which identifies the amount of information the patient prefers to receive about their disease and treatment, the patient’s treatment goal, the patient’s perception of the physician’s treatment goal, and self-reported health status. Results: We recruited 60 patients with NETs (50.0% aged ≥65 years; 96.7% with stage IV disease). Primary tumor locations included the gastrointestinal tract (41.7%), pancreas (30.0%), and lung (21.7%). A plurality of patients reported maintaining independence as their most important health outcome (46.7%), followed by survival (30.0%), freedom from pain (11.7%), and freedom from symptoms (11.7%). A total of 67% of patients agreed with the statement, “I would rather live a shorter life than lose my ability to take care of myself”; 85.0% agreed with the statement, “It is more important to me to maintain my thinking ability than to live as long as possible.” When asked to choose between current QoL versus QoL 1 year or 5 years in the future as more important, 48.3% and 40.0% of patients valued their QoL 1 year and 5 years in the future, respectively, more than their current QoL. Only 51.7% of patients believed their physician’s treatment goals aligned with their own. Conclusions: Adult patients with NETs strongly value independence over survival. More communication between patients with NETs and their physicians is needed to ensure that patient preferences are incorporated into treatment plans.

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Small Cell Lung Cancer

Gregory P. Kalemkerian, Wallace Akerley, Paul Bogner, Hossein Borghaei, Laura QM Chow, Robert J. Downey, Leena Gandhi, Apar Kishor P. Ganti, Ramaswamy Govindan, John C. Grecula, James Hayman, Rebecca Suk Heist, Leora Horn, Thierry Jahan, Marianna Koczywas, Billy W. Loo Jr, Robert E. Merritt, Cesar A. Moran, Harvey B. Niell, Janis O’Malley, Jyoti D. Patel, Neal Ready, Charles M. Rudin, Charles C. Williams Jr, Kristina Gregory, and Miranda Hughes

Neuroendocrine tumors account for approximately 20% of lung cancers; most (≈15%) are small cell lung cancer (SCLC). These NCCN Clinical Practice Guidelines in Oncology for SCLC focus on extensive-stage SCLC because it occurs more frequently than limited-stage disease. SCLC is highly sensitive to initial therapy; however, most patients eventually die of recurrent disease. In patients with extensive-stage disease, chemotherapy alone can palliate symptoms and prolong survival in most patients; however, long-term survival is rare. Most cases of SCLC are attributable to cigarette smoking; therefore, smoking cessation should be strongly promoted.

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Small Cell Lung Cancer

Gregory P. Kalemkerian, Wallace Akerley, Paul Bogner, Hossein Borghaei, Laura Chow, Robert J. Downey, Leena Gandhi, Apar Kishor P. Ganti, Ramaswamy Govindan, John C. Grecula, James Hayman, Rebecca Suk Heist, Leora Horn, Thierry M. Jahan, Marianna Koczywas, Cesar A. Moran, Harvey B. Niell, Janis O'Malley, Jyoti D. Patel, Neal Ready, Charles M. Rudin, and Charles C. Williams Jr.

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NCCN Guidelines Insights: Small Cell Lung Cancer, Version 2.2018

Gregory P. Kalemkerian, Billy W. Loo Jr, Wallace Akerley, Albert Attia, Michael Bassetti, Yanis Boumber, Roy Decker, M. Chris Dobelbower, Afshin Dowlati, Robert J. Downey, Charles Florsheim, Apar Kishor P. Ganti, John C. Grecula, Matthew A. Gubens, Christine L. Hann, James A. Hayman, Rebecca Suk Heist, Marianna Koczywas, Robert E. Merritt, Nisha Mohindra, Julian Molina, Cesar A. Moran, Daniel Morgensztern, Saraswati Pokharel, David C. Portnoy, Deborah Rhodes, Chad Rusthoven, Jacob Sands, Rafael Santana-Davila, Charles C. Williams Jr, Karin G. Hoffmann, and Miranda Hughes

The NCCN Guidelines for Small Cell Lung Cancer (SCLC) address all aspects of disease management. These NCCN Guidelines Insights focus on recent updates to the NCCN Guidelines for SCLC regarding immunotherapy, systemic therapy, and radiation therapy. For the 2018 update, new sections were added on “Signs and Symptoms of SCLC” and “Principles of Pathologic Review.”

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Small Cell Lung Cancer, Version 2.2022, NCCN Clinical Practice Guidelines in Oncology

Apar Kishor P. Ganti, Billy W. Loo Jr., Michael Bassetti, Collin Blakely, Anne Chiang, Thomas A. D'Amico, Christopher D'Avella, Afshin Dowlati, Robert J. Downey, Martin Edelman, Charles Florsheim, Kathryn A. Gold, Jonathan W. Goldman, John C. Grecula, Christine Hann, Wade Iams, Puneeth Iyengar, Karen Kelly, Maya Khalil, Marianna Koczywas, Robert E. Merritt, Nisha Mohindra, Julian Molina, Cesar Moran, Saraswati Pokharel, Sonam Puri, Angel Qin, Chad Rusthoven, Jacob Sands, Rafael Santana-Davila, Michael Shafique, Saiama N. Waqar, Kristina M. Gregory, and Miranda Hughes

The NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) for Small Cell Lung Cancer (SCLC) provide recommended management for patients with SCLC, including diagnosis, primary treatment, surveillance for relapse, and subsequent treatment. This selection for the journal focuses on metastatic (known as extensive-stage) SCLC, which is more common than limited-stage SCLC. Systemic therapy alone can palliate symptoms and prolong survival in most patients with extensive-stage disease. Smoking cessation counseling and intervention should be strongly promoted in patients with SCLC and other high-grade neuroendocrine carcinomas. The “Summary of the Guidelines Updates” section in the SCLC algorithm outlines the most recent revisions for the 2022 update, which are described in greater detail in this revised Discussion text.