Demographic factors such as race, socioeconomic status, gender identity, area of residence, native language, and cultural barriers have an effect on outcomes in cancer care. To identify unmet needs, challenges, and opportunities in achieving high-quality, patient-centered cancer care for all, NCCN conducted a yearlong environmental scan, which involved stakeholder meetings with patients and patient advocacy groups to discuss these topics. The findings from this scan informed the corresponding NCCN Patient Advocacy Summit: Advocating for Equity in Cancer Care, held in Washington, DC, on December 10, 2018. In addition to the many patient advocacy groups, the summit featured a number of other stakeholders that advocate for equity in cancer care. This article encapsulates the findings of the environmental scan and the discussion from the NCCN Patient Advocacy Summit.
James McCanney, Terrell Johnson, Lindsey A.M. Bandini, Shonta Chambers, Lynette Bonar and Robert W. Carlson
Deena R. Levine, Liza-Marie Johnson, Angela Snyder, Robert K. Wiser, Deborah Gibson, Javier R. Kane and Justin N. Baker
Background: The demonstrated benefit of integrating palliative care (PC) into cancer treatment has triggered an increased need for PC services. The trajectory of integrating PC in comprehensive cancer centers, particularly pediatric centers, is unknown. We describe our 8-year experience of initiating and establishing PC with the Quality of Life Service (QoLS) at St. Jude Children's Research Hospital. Methods: We retrospectively reviewed records of patients seen by the QoLS (n=615) from March 2007 to December 2014. Variables analyzed for each year, using descriptive statistics, included diagnostic groups, QoLS encounters, goals of care, duration of survival, and location of death. Results: Total QoLS patient encounters increased from 58 (2007) to 1,297 (2014), new consults increased from 17 (2007) to 115 (2014), and mean encounters per patient increased from 5.06 (2007) to 16.11 (2014). Goal of care at initial consultation shifted from primarily comfort to an increasing goal of cure. The median number of days from initial consult to death increased from 52 days (2008) to 223 days (2014). A trend toward increased outpatient location of death was noted with 42% outpatient deaths in 2007, increasing to a majority in each subsequent year (range, 51%–74%). Hospital-wide, patients receiving PC services before death increased from approximately 50% to nearly 100%. Conclusions: Since its inception, the QoLS experienced a dramatic increase in referrals and encounters per patient, increased use by all clinical services, a trend toward earlier consultation and longer term follow-up, increasing outpatient location of death, and near-universal PC involvement at the end-of-life. The successful integration of PC in a comprehensive cancer center, and the resulting potential for improved care provision over time, can serve as a model for other programs on a broad scale.
Terrell Johnson, Lindsey A.M. Bandini, Kara Martin, Lee Jones, Jennifer Carlson, Ronald S. Walters and Robert W. Carlson
Health policy in America has shifted rapidly over the last decade, and states are increasingly exercising greater authority over health policy decision-making. This localization and regionalization of healthcare policy poses significant challenges for patients with cancer, providers, advocates, and policymakers. To identify the challenges and opportunities that lay ahead of stakeholders, NCCN hosted the 2019 Policy Summit: The State of Cancer Care in America on June 27, 2019, in Washington, DC. The summit featured multidisciplinary panel discussions to explore the implications for access to quality cancer care within a shifting health policy landscape from a patient, provider, and lawmaker perspective. This article encapsulates the discussion from this NCCN Policy Summit.
Terrell Johnson, Lindsey A.M. Bandini, Darryl Mitteldorf, Elizabeth Franklin, Justin E. Bekelman and Robert W. Carlson
As the oncology ecosystem shifts from service-based care to outcomes and value-based care, stakeholders cite concerns regarding the lack of patient experience data that are important to the patient community. To address the patient perspective and highlight the challenges and opportunities within policy and clinical decision-making to improve patient-centered care, NCCN hosted the NCCN Patient Advocacy Summit: Delivering Value for Patients Across the Oncology Ecosystem on December 11, 2019, in Washington, DC. The summit featured multidisciplinary panel discussions, keynote speakers, and patient advocate presentations exploring the implications for patient-centered care within a shifting health policy landscape. This article encapsulates and expounds upon the discussions and presentations from the summit.
Jeffrey M. Martin, Tianyu Li, Matthew E. Johnson, Colin T. Murphy, Alan G. Howald, Marc C. Smaldone, Alexander Kutikov, David Y.T. Chen, Rosalia Viterbo, Richard E. Greenberg, Robert G. Uzzo and Eric M. Horwitz
Purpose: Characterize use of postprostatectomy radiation (PPRT) for patients with prostate cancer at an NCI-designated comprehensive cancer center. Methods: We queried our prospective prostate cancer database for patients treated with 60 to 68 Gy of radiation therapy (RT) to the prostate bed after prostatectomy from 2003 to 2011. Prostatectomy cases were obtained from billing records. Patients with an intact prostate treated with definitive RT served as a control for the change in volume of patients with prostate cancer treated in the department. Chi-square analysis assessed differences between adjuvant and salvage RT cohorts. Spearman correlation assessed yearly trends in prostate-specific antigen (PSA) level at the time of referral for RT. Linear regression models tested trends for number of PPRT cases, prostatectomies, and patients with intact prostate receiving radiation across years. Results: PPRT was used to treat 475 men at Fox Chase Cancer Center from 2003 to 2011 (83 adjuvant and 392 salvage). Over time, an increased proportion of patients receiving RT to the prostate were treated with PPRT. No increase was seen in the proportion of patients treated with adjuvant RT compared with salvage RT (P=.5). Patients receiving adjuvant RT were younger, had higher pathologic Gleason score, pathologic T stage, and rates of positive margins than those receiving salvage RT. Pre-RT PSA values were inversely correlated with year (P=.005). The number of patients referred for salvage RT with a PSA of 0.5 ng/mL or less increased significantly from 7.9% in 2003 to 26.6% in 2011 (P=.002). Conclusions: A larger proportion of patients treated with RT for localized prostate cancer are now receiving PPRT. No increase was seen in the proportion of patients treated with adjuvant RT. Over time, patients with lower PSAs were referred for salvage RT.
Lindsey A.M. Bandini, Leigh Gallo, Terrell Johnson, Kara Martin, Alyssa A. Schatz, Kerin Adelson, Bryan A. Loy, Ronald S. Walters, Tracy Wong and Robert W. Carlson
Quality measurement is a critical component of advancing a health system that pays for performance over volume. Although there has been significant attention paid to quality measurement within health systems in recent years, significant challenges to meaningful measurement of quality care outcomes remain. Defining cost can be challenging, but is arguably not as elusive as quality, which lacks standard measurement methods and units. To identify industry standards and recommendations for the future, NCCN recently hosted the NCCN Oncology Policy Summit: Defining, Measuring, and Applying Quality in an Evolving Health Policy Landscape and the Implications for Cancer Care. Key stakeholders including physicians, payers, policymakers, patient advocates, and technology partners reviewed current quality measurement programs to identify success and challenges, including the Oncology Care Model. Speakers and panelists identified gaps in quality measurement and provided insights and suggestions for further advancing quality measurement in oncology. This article provides insights and recommendations; however, the goal of this program was to highlight key issues and not to obtain consensus.
Peter F. Coccia, Jessica Altman, Smita Bhatia, Scott C. Borinstein, Joseph Flynn, Suzanne George, Robert Goldsby, Robert Hayashi, Mary S. Huang, Rebecca H. Johnson, Lynda Kwon Beaupin, Michael P. Link, Kevin C. Oeffinger, Kathleen M. Orr, Alberto S. Pappo, Damon Reed, Holly L. Spraker, Deborah A. Thomas, Margaret von Mehren, Daniel S. Wechsler, Kimberly F. Whelan, Bradley J. Zebrack, Hema Sundar and Dorothy A. Shead
Cancer is the leading cause of death among the adolescent and young adult (AYA) population, excluding homicide, suicide, or unintentional injury. AYA patients should be managed by a multidisciplinary team of health care professionals who are well-versed in the specific developmental issues relevant to this patient population. The recommendations for age-appropriate care outlined in these NCCN Guidelines include psychosocial assessment, a discussion of infertility risks associated with treatment and options for fertility preservation, genetic and familial risk assessment for all patients after diagnosis, screening and monitoring of late effects in AYA cancer survivors after successful completion of therapy, and palliative care and end-of-life considerations for patients for whom curative therapy fails.
Peter F. Coccia, Alberto S. Pappo, Jessica Altman, Smita Bhatia, Scott C. Borinstein, Joseph Flynn, A. Lindsay Frazier, Suzanne George, Robert Goldsby, Robert Hayashi, Mary S. Huang, Rebecca H. Johnson, Lynda Kwon Beaupin, Michael P. Link, Kevin C. Oeffinger, Kathleen M. Orr, Damon Reed, Holly L. Spraker, Deborah A. Thomas, Margaret von Mehren, Daniel S. Wechsler, Kimberly F. Whelan, Brad Zebrack, Dorothy A. Shead and Hema Sundar
The NCCN Guidelines Insights on Adolescent and Young Adult (AYA) Oncology discuss the fertility and endocrine issues that are relevant to the management of AYA patients with cancer. Fertility preservation should be an essential part in the treatment of AYA patients with cancer. The NCCN Guidelines recommend discussion of fertility preservation and contraception before the start of treatment. Oophoropexy and embryo cryopreservation are the 2 established options for fertility preservation in women. Semen cryopreservation before the start of treatment is the most reliable and well-established method of preserving fertility in men. AYA women with cancer also have unique contraception needs, depending on the type of cancer, its treatment, and treatment-related complications. Management of cancer during pregnancy poses significant diagnostic and therapeutic challenges for both the patient and the physician. AYA women diagnosed with cancer during pregnancy require individualized treatment from a multidisciplinary team involving medical, surgical, radiation, and gynecologic oncologists; obstetricians; and perinatologists.
Peter L. Greenberg, Richard M. Stone, Aref Al-Kali, Stefan K. Barta, Rafael Bejar, John M. Bennett, Hetty Carraway, Carlos M. De Castro, H. Joachim Deeg, Amy E. DeZern, Amir T. Fathi, Olga Frankfurt, Karin Gaensler, Guillermo Garcia-Manero, Elizabeth A. Griffiths, David Head, Ruth Horsfall, Robert A. Johnson, Mark Juckett, Virginia M. Klimek, Rami Komrokji, Lisa A. Kujawski, Lori J. Maness, Margaret R. O'Donnell, Daniel A. Pollyea, Paul J. Shami, Brady L. Stein, Alison R. Walker, Peter Westervelt, Amer Zeidan, Dorothy A. Shead and Courtney Smith
The myelodysplastic syndromes (MDS) comprise a heterogenous group of myeloid disorders with a highly variable disease course. Diagnostic criteria to better stratify patients with MDS continue to evolve, based on morphology, cytogenetics, and the presence of cytopenias. More accurate classification of patients will allow for better treatment guidance. Treatment encompasses supportive care, treatment of anemia, low-intensity therapy, and high-intensity therapy. This portion of the guidelines focuses on diagnostic classification, molecular abnormalities, therapeutic options, and recommended treatment approaches.
Robert I. Haddad, Christian Nasr, Lindsay Bischoff, Naifa Lamki Busaidy, David Byrd, Glenda Callender, Paxton Dickson, Quan-Yang Duh, Hormoz Ehya, Whitney Goldner, Megan Haymart, Carl Hoh, Jason P. Hunt, Andrei Iagaru, Fouad Kandeel, Peter Kopp, Dominick M. Lamonica, Bryan McIver, Christopher D. Raeburn, John A. Ridge, Matthew D. Ringel, Randall P. Scheri, Jatin P. Shah, Rebecca Sippel, Robert C. Smallridge, Cord Sturgeon, Thomas N. Wang, Lori J. Wirth, Richard J. Wong, Alyse Johnson-Chilla, Karin G. Hoffmann and Lisa A. Gurski
The NCCN Guidelines for Thyroid Carcinoma provide recommendations for the management of different types of thyroid carcinoma, including papillary, follicular, Hürthle cell, medullary, and anaplastic carcinomas. These NCCN Guidelines Insights summarize the panel discussion behind recent updates to the guidelines, including the expanding role of molecular testing for differentiated thyroid carcinoma, implications of the new pathologic diagnosis of noninvasive follicular thyroid neoplasm with papillary-like nuclear features, and the addition of a new targeted therapy option for BRAF V600E–mutated anaplastic thyroid carcinoma.