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Value Tools for Patients in Cancer Care

Katy Winckworth-Prejsnar, Lisa Korin Lentz, Elizabeth A. Nardi, Sandhya Pruthi, C. Lyn Fitzgerald, and Robert W. Carlson

In order to empower patients as partners in their healthcare decisions, there is an identified need for value tools that provide enough information to help them make decisions regarding their cancer care journey. NCCN convened a multistakeholder working group to identify the gaps and needs of current value tools and develop a set of findings and recommendations for the evolution of value tools for patients. The findings and recommendations of the working group were then presented at the Value Tools for Patients in Cancer Care Patient Advocacy Summit in December 2016, and multistakeholder roundtable panel discussions explored these findings and recommendations along with additional items. This article encapsulates the discussion from the NCCN Working Group meetings and the NCCN Patient Advocacy Summit, including identified gaps and needs in defining value in cancer care, identified principles and parameters of value tools for patients in cancer care, and consensus statements and recommendations offered by the NCCN Working Group.

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Phyllodes Tumors of the Breast: Natural History, Diagnosis, and Treatment

Melinda L. Telli, Kathleen C. Horst, Alice E. Guardino, Frederick M. Dirbas, and Robert W. Carlson

Phyllodes tumors of the breast are unusual fibroepithelial tumors that exhibit a wide range of clinical behavior. These tumors are categorized as benign, borderline, or malignant based on a combination of histologic features. The prognosis of phyllodes tumors is favorable, with local recurrence occurring in approximately 15% of patients overall and distant recurrence in approximately 5% to 10% overall. Wide excision with a greater than 1 cm margin is definitive primary therapy. Adjuvant systemic therapy is of no proven value. Patients with locally recurrent disease should undergo wide excision of the recurrence with or without subsequent radiotherapy.

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Patient, Caregiver, and Oncologist Experiences With and Perceptions of Racial Bias and Discrimination in Cancer Care Delivery

Alyssa A. Schatz, Keysha Brooks-Coley, Elizabeth Harrington, Mary Stober Murray, and Robert W. Carlson

Background: Cancer prevention and treatment systems are significantly impacted by interpersonal, organizational, and structural and systemic racism. A wide body of research has found that racial disparities in access to guideline-adherent cancer care are pervasive throughout the United States and contributing factors include social determinants of health, insurance status, and bias and discrimination in care delivery. Although the existence of racial disparities in cancer care and outcomes is well established, there has been limited research exploring the patient and caregiver experience with bias and discrimination in cancer care. Methods: Two national surveys were conducted, one of patients and caregivers and one of oncologists. The surveys examined patient and caregiver experiences with and oncologist perceptions of racial disparities in cancer care. Results: The surveys found that when patients and caregivers were asked about negative care experiences, differences across race were observed. Patients and caregivers identifying as African American/Black (AA/B) or Hispanic/Latino (H/L) were more likely to report at least one negative care experience than patients and caregivers identifying as White (W). Patients who were AA/B or H/L were also more likely than W patients to report that the healthcare system treats people unfairly based on their racial or ethnic background and that racial bias occurs often or very often when a patient and doctor are of different racial/ethnic background. A slight majority of oncologists reported that the healthcare system treats people unfairly based on their racial or ethnic background. Conclusions: The survey results highlight a need for improved racial representation in the oncology professional workforce, improved implicit bias training, and improved clinical trial recruitment efforts.

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NCCN Patient Advocacy Summit: Delivering Value for Patients Across the Oncology Ecosystem

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.

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Policy Strategies for the “New Normal” in Healthcare to Ensure Access to High-Quality Cancer Care

Alyssa A. Schatz, Katy Winckworth Prejsnar, James McCanney, Meghan Gutierrez, Stefanie Joho, Joseph Alvarnas, and Robert W. Carlson

In recent years, oncology has seen a rapid increase in the introduction of high-cost innovative therapies while scrutiny around drug pricing has simultaneously amplified. Significant policy shifts impacting health coverage and benefit design are also being implemented, including narrow network health plans, uncertainty around the Affordable Care Act insurance exchanges, and threats to preexisting condition protections. Shifting health coverage policy combined with high drug prices and outdated reimbursement systems may create barriers to patient access to innovation and high-quality cancer care. To understand how trends in health policy are impacting the oncology ecosystem, NCCN convened the NCCN Policy Summit: Policy Strategies for the “New Normal” in Healthcare to Ensure Access to High-Quality Cancer Care on June 25, 2018. The summit included discussion of how innovation is changing cancer treatment, care delivery, and ways health systems are responding; the impact of narrow networks on access to academic cancer centers; and how the evolving health policy landscape is affecting access to high-quality cancer care for patients.

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Advocating for Equity in Cancer Care

James McCanney, Terrell Johnson, Lindsey A.M. Bandini, Shonta Chambers, Lynette Bonar, and Robert W. Carlson

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.

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NCCN Virtual Patient Advocacy Summit: Cancer Across the Lifespan

Kara Martin, Alyssa A. Schatz, Jan S. White, Hyman Muss, Aarati Didwania, Leigh Gallo, and Robert W. Carlson

Patients with cancer have widely divergent experiences throughout their care from screening through survivorship. Differences in care delivery and outcomes may be due to varying patient preferences, patient needs according to stage of life, access to care, and implicit or explicit bias in care according to patient age. NCCN convened a series of stakeholder meetings with patients, caregivers, and patient advocacy groups to discuss the complex challenges and robust opportunities in this space. These meetings informed the NCCN Virtual Patient Advocacy Summit: Cancer Across the Lifespan held on December 10, 2020, which featured a keynote presentation, multidisciplinary panels, and presentations from patient advocacy organizations. This article encapsulates and expounds upon the findings from the stakeholder meetings and discussions during the summit.

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NCCN Policy Summit: Reducing the Cancer Burden Through Prevention and Early Detection

Lindsey Bandini, Alyssa Schatz, Victoria Hood, Nikia Clark, Michael J. Hall, and Robert W. Carlson

Cancer prevention, screening, and early detection play an integral role in cancer incidence and outcomes. It is estimated that 30% to 50% of cancers worldwide are preventable, and it is well established that early detection of many cancers is associated with improved treatment outcomes. A recent NCCN Policy Summit: Reducing the Cancer Burden Through Prevention and Early Detection brought together healthcare providers, payers, policymakers, patient advocates, industry representatives, and technology representatives to explore challenges, triumphs, and outstanding questions surrounding current practices. Keynotes were delivered by Dr. Lisa Richardson, Director of the Division of Cancer Prevention and Control within the CDC, and Dr. Danielle Carnival, White House Cancer Moonshot Coordinator. Dr. Richardson focused on the field of public health, translating its utility in preventing and diagnosing cancer in the United States, while Dr. Carnival discussed ambitious goals by the Cancer Moonshot in reducing the cancer burden. Panelists highlighted characteristics of high-impact prevention and early detection programs, including how genetic testing has impacted this space. Existing programs are often challenged due to limitations in data, as well as financial, structural, and social barriers to motivating individuals to act on recommendations. Despite these barriers, we can learn from highly successful programs and should apply proven attributes, such as community engagement, more broadly.

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BPI20-023: International Adaptation of the Resource-Stratified NCCN Frameworks for Breast, Cervical and Rectal Cancers in Bolivia

Steven J. Schuetz, Claudia B. Soliz P., Maribel Marmol C., Marco A. Vasquez V., and Robert W. Carlson

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International Adaptations of NCCN Clinical Practice Guidelines in Oncology

Robert W. Carlson, Jonathan K. Larsen, Joan McClure, C. Lyn Fitzgerald, Alan P. Venook, Al B. Benson III, and Benjamin O. Anderson

The NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) are evidence- and consensus-based clinical practice guidelines addressing malignancies that affect more than 97% of all patients with cancer in the United States. The NCCN Guidelines are used extensively in the United States and globally. Use of the guidelines outside the United States has driven the need to adapt the guidelines based on local, regional, or national resources. The NCCN Guidelines Panels created, vetted, and continually update the NCCN Guidelines based on published scientific data on cancer detection, diagnosis, and treatment efficacy. The guidelines are developed within the context of commonly available resources, methods of payment, societal and cultural expectations, and governmental regulations as they exist in the United States. Although many of the cancer management recommendations contained in the NCCN Guidelines apply broadly from a global perspective, not all do. Disparities in availability and access to health care exist among countries, within countries, and among different social groups in the same country, especially regarding resources for cancer prevention, early detection, and treatment. In addition, different drug approval and payment processes result in regional variation in availability of and access to cancer treatment, especially highly expensive agents and radiation therapy. Differences in cancer risk, predictive biomarker expression, and pharmacogenetics exist across ethnic and racial groups, and therefore across geographic locations. Cultural and societal expectations and requirements may also require modification of NCCN Guidelines for use outside the United States. This article describes the adaptation process, using the recent Latin American adaptation of the 2013 NCCN Guidelines for Colorectal Cancer as an example.