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Proceedings of a Workshop
Pages 1-58

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From page 1...
... To examine opportunities to prevent and mitigate the adverse effects of cancer treatment, the National Academies of Sciences, Engineering, and Medicine (the National Academies) convened the virtual workshop, Addressing the Adverse Consequences of Cancer Treatment, on November 9 and 10, 2020.
From page 2...
... The workshop Statement of Task is provided in Appendix A and the workshop agenda is in Appendix B Speaker presentations and the webcast have been archived online.2 THE CHANGING LANDSCAPE OF CANCER CARE AND SURVIVORSHIP Advances in oncology care have led to an increasing number of cancer survivors.
From page 3...
... • Screen patients for financial distress associated with cancer care and connect them to resources to help address it. (Burris, Henley, Samuel-Ryals, Zafar)
From page 4...
... registries, EHRs, clinical trials, genomics testing, and claims data to address gaps in individual sources to more comprehensively track adverse effects in real-world patient populations over a patient's lifetime. (Keating, Magee, Penberthy, Ramsey, Shulman, Unger, Yabroff)
From page 5...
... Implementing New Models of Cancer Care Delivery and Payment • Develop patient-centered models for payment of survivorship care, including remote care and monitoring. (Keating)
From page 6...
... Several speakers discussed the delicate balance between treatments that may extend lives but that may also reduce quality of life. Lawrence Shulman, professor of medicine from the University of Pennsylvania, said that some of the adverse consequences of cancer treatment have increased the risk of second cancers and other treatment-related medical complications among cancer survivors (see Figure 1)
From page 7...
... • Counter selection bias in clinical trials by linking to population-based registries or integrated care delivery systems. (Flowers)
From page 8...
... She stated that her treatment probably led to her second diagnosis of breast cancer when she was 43 years old. ­Conway said that because of the danger of possibly reradiating an area Medical School and member of the Department of Radiation Oncology at Massachusetts General Hospital -- discussed the effects of cancer treatment on survivors of pediatric cancer.
From page 9...
... . Robison noted that overall, childhood cancer survivors have
From page 11...
... FIGURE 1  Second malignancies after Hodgkin's treatment. NOTES: Solid lines represent the observed incidence and dashed lines the expected incidence in the general population.
From page 12...
... . Robison stressed that while the incidence of serious chronic conditions among childhood cancer survivors has decreased since the 1970s, it is still higher than what is seen in the general population (Armstrong et al., 2016; Gibson et al., 2018)
From page 13...
... K Scott Baker, professor and director of the Pediatric Blood and Marrow Transplant Program and the Cancer Survivorship Program at the Fred Hutchinson Cancer Research Center and professor at the University of Washington School of Medicine, agreed with other speakers that many AYA treated for cancer experience long-term adverse effects as a result of their treatments.
From page 14...
... Cleo Samuel-Ryals, associate professor and health science researcher at the University of North Carolina at Chapel Hill, said the psychosocial effects are just as serious as the physical effects of cancer treatment. Harpham and Cella emphasized that the distress associated with coping with the adverse effects of cancer treatments adds to the difficulty cancer survivors face.
From page 15...
... Zafar also said that health insurance does not cover indirect costs of cancer care, such as childcare; transportation to and from a cancer treatment center; lost work and lost income during treatment and possible resulting sick days; and the cost of legal services, medical supplies, and specialized diets. Mary (Dicey)
From page 16...
... . An October 2021 workshop hosted by NCPF will focus on ways to reduce health disparities and promote health equity in cancer care and patient outcomes.7 Ashley Leak Bryant, associate professor in the University of North ­Carolina at Chapel Hill School of Nursing, added that there are number of 5 See https://www.healthypeople.gov/2020/topics-objectives/topic/social-determinants-of health (accessed August 12, 2021)
From page 17...
... He added that there is a need for patients with cancer to be part of a community outside of the clinic so that they can lean on someone for support, particularly in the absence of professional help. Catherine Alfano, vice president of cancer care management and research at Northwell Health Cancer Institute, agreed that the lack of behavioral health professionals increases the need for patients to learn and engage in appropriate self-management techniques.
From page 18...
... She said that cancer survivorship care is often shared with primary care and other specialties, and it is challenging to attribute who has primary responsibility for providing care in these settings. Keating added that fee-for-service models do not cover or incentivize care provided outside of office visits and also do not incentivize care coordination among multiple members of the care team.
From page 19...
... She pointed out that individuals typically enroll in a commercial health plan for less than 2 years before changing plans, either because they change ­employers or their employer changes health plans. Malin stressed that this lack of long-term follow up on patients serves as a disincentive to addressing the long-term consequences of cancer care.
From page 20...
... He said that convenience needs to be improved, and new recruitment methods are needed to increase participation of the AYA population in research. OPPORTUNITIES TO REDUCE ADVERSE CONSEQUENCES ACROSS THE CANCER CARE CONTINUUM Participants suggested a number of strategies for meeting the challenges in addressing the adverse consequences of cancer treatment.
From page 21...
... Sepucha said that decision making can be an extra burden for people already dealing with a cancer diagnosis. Shelley Fuld Nasso, chief executive officer at the National Coalition for Cancer Survivorship, said that clinician communication skills are crucial, even for those patients who prefer having their care team make treatment decisions.
From page 22...
... Several participants said that clinicians need to recognize the emotional impact of a cancer diagnosis on patients and to provide patients with written information about their treatment options and potential adverse consequences. Sepucha, Smith, and others also stressed that it is critical to provide written information that is easily understandable and that can be taken home, reviewed, and shared with others involved in shaping care decisions.
From page 23...
... Inter-Clinician Communication Bryant said that cancer care outcomes can be improved with effective communication and teamwork. She noted that clinicians need to be competent in communicating with both patients and their families, and with other members of the patient's care team.
From page 24...
... Moslehi said that cancer survivors undergo extensive screening for cancer, but "we don't pay as much attention as we should to the heart disease part." Moslehi's cardio-oncology program developed a protocol for cancer survivors to promote cardiovascular wellness. The program was adopted by the National Cancer Center Network,a and outlines care algorithms for patients with cancer (Denlinger et al., 2020)
From page 25...
... She said that the traditional narrow approach can miss longer-term side effects such as secondary cancers, financial and psychosocial effects, functional decline, and cognitive impairment. Bynum agreed, saying that much of the focus in cancer care has been on extending life with treatments, but often, quality of life is neglected.
From page 26...
... Learning Health Care System and Patient Stratification To provide more personalized care, Keating and Alfano suggested digitally tracking patient symptoms and quality-of-life information and embedding that data in a learning health care system that integrates research and practice. They said that such a system could provide more accurate predictions of an individual patient's risk of developing adverse consequences from their cancer treatments.
From page 27...
... Malin suggested that clinicians shift from preventive care for the average-risk individual to stratifying all patients with cancer to enable patients to receive appropriate preventive care throughout the cancer care continuum. Alfano also suggested that self-management should be the cornerstone of cancer survivorship care just as it is in the management of other chronic diseases.
From page 28...
... Justin Bekelman, professor of radiation oncology and medical ethics and health policy at the Perelman School of Medicine at the University of ­Pennsylvania, suggested the need to invest in a diverse, culturally competent workforce to achieve better health equity. Emily Tonorezos, director of the Office of Cancer Survivorship at NCI, suggested adapting psychological stress assessments and care management pro grams that are culturally appropriate for underserved populations, including LGBTQ populations.
From page 29...
... Traditionally, researchers determined the adverse consequences of cancer treatments from clinical trial data. But Kelly Magee, senior clinical director at Flatiron Health, said that because of the limited amount of time patients are followed on clinical trials, the full breadth of adverse effects of treatments over a long period of time is not well known.
From page 30...
... He also suggested having databases that combine data from multiple sources, including EHRs, registries, clinical trials, genomics testing, and claims data. Penberthy reported on the SEER database and its capacity to link to other databases (see Box 4)
From page 31...
... Penberthy noted that SEER is currently undergoing an enhancement to create a system that represents population-level, real-world data "that can help us understand the use and effec tiveness of oncology care for the 95 percent of patients who are outside the clinical trial setting." It will be updated to incorporate more clinically meaningful categories, such as tumor subtypes, and researchers are now working to develop methods to enable cancer reporting in near real time using natural language processing and linkages with external partners. These enhancements should enable SEER to capture detailed longitudinal treatment data, comprehensive genomic data that can characterize each patient's cancer, concurrent illnesses, and cancer recurrence to provide context for the therapies and outcomes.
From page 32...
... The Healthcare Delivery Research Program14 includes a specific area of interest on financial burdens of cancer care and cancer treatment, as well as factors that reduce and mitigate economic hardship, Halpern explained. 13 See https://healthcaredelivery.cancer.gov/poc (accessed October 28, 2021)
From page 33...
... Furthermore, KP's EHRs enable documentation across the full cancer care continuum, including primary care, preventive continued
From page 34...
... More than three-quarters of members in Northern California diagnosed with cancer, for example, are still enrolled in KP up to 20 years post-cancer diagnosis or until their deaths. The KP membership is diverse and representative of the communities it serves, Kushi stated, unlike the participants in clinical trials, who tend to be younger, whiter, and healthier than the population at large.
From page 35...
... . Yabroff suggested that a national coordinated data infrastructure for informing care delivery and research could help ensure delivery of better cancer care in the future.
From page 36...
... Another important limitation is the lack of younger patients, since most Medicare recipients are 65 or older. But he stressed that researchers can use Medicare claims data to augment the detec tion of long-term outcomes or late effects in patients from clinical trials at a much-reduced cost than if these patients were followed over the long term.
From page 37...
... Scott Ramsey, professor of cancer prevention and research at the Fred Hutchinson Cancer Research Center and director of the Hutchinson Institute for Cancer Outcomes Research, stressed that data will only be compelling in the clinical sphere if it is actionable and closer to real time. Technology Many participants suggested ways that technology to can be used to both prevent adverse consequences of cancer treatment and address the consequences when they occur.
From page 38...
... In addition, the survey system creates individualized treatment summaries and survivorship care plans, including cumulative dose tracking of relevant drugs whose effects on cardiac functioning is dose dependent. Baker noted the survey system could be combined with telehealth to provide remote clinical care for AYA cancer survivors.
From page 39...
... Alfano added that patients benefit from equitable and timely access to a much bigger multidisciplinary team for cancer care and survivorship that includes cancer rehabilitation, palliative care, psychosocial care, exercise and nutrition programs, dentistry, genetic counseling, cardio-oncology, endocrinology, neurology, audiology, and other specialists needed to meet patient needs. Bekelman also stressed the importance of collaborative and team-based care.
From page 40...
... . Yet, one study of early-stage breast cancer survivors receiving care in an integrated health care system found that the patients' adherence to statin therapy dropped from 75 percent adherence in the year before diagnosis to 25 percent adherence after the first year of breast cancer treatment.
From page 41...
... OCM practices are also required to provide enhanced services, including 24/7 access to clinicians, patient navigation, and care consistent with national guidelines. They must also furnish a cancer care plan for each patient.
From page 42...
... That may change after more years of evaluation, but CMMI has already begun to assess how to incorporate lessons learned from OCM in potential new oncology model,17 she added. Other Models for Oncology Care Delivery and Payments Strawbridge also described the proposed CMS Radiation Oncology Model,18 which provides 90-day, episode-based payments to practices for patients initiating radiation therapy for 1 of 16 cancer types.
From page 43...
... Keating said that another cancer care delivery model, proposed by ASCO,19 is the Oncology Medical Home, which seeks to provide patient-focused care that is accessible, efficient, and high quality, and that is optimized based on evidence from quality measures. The Oncology Medical Home model shares some features of OCM, including accountability for costs of care, although that accountability excludes the cost of anti-cancer drugs, she said.
From page 44...
... One compelling example is the initial use of high-dose chemotherapy and bone marrow transplant to treat women with advanced breast cancer although later clinical trials revealed that it was ineffective for this patient population. Trials that are well done and well publicized can have a big impact on practice patterns, Howard concluded (Howard et al., 2011)
From page 45...
... She emphasized that it is essential to determine when screening for the complication should begin and for how long, based on when the exposure that can cause the complication occurred and how long it takes until symptoms of the complication are likely to surface. Bhatia reported that the Children's Oncology Group21 developed guidelines for the health maintenance of pediatric cancer survivors in response to a recommendation in an Institute of Medicine and National Research Council report on childhood cancer survivorship (IOM and NRC, 2003)
From page 46...
... report having one or more types of financial hardship, 87 percent of those who lack health insurance reported financial hardship. Medicare coverage in particular significantly decreased the amount of financial hardship cancer survivors reported (Yabroff et al., 2020)
From page 47...
... Keating noted that research is needed on different payment models for delivering care as well as research to develop reliable measures of quality and equity of care for cancer survivors. She suggested that it would be helpful to design payment models both for patients undergoing treatment and those who have completed treatment.
From page 48...
... She noted a current study at the Fred Hutchinson Cancer Research Center that uses modeling of data for patients with prostate cancer to identify active surveillance strategies to minimize patient burden without increasing risks of cancer progression. Tonorezos also suggested that machine learning could be applied to clinical data to determine the best timing for integrating primary and/or specialty care into cancer care.
From page 49...
... Bradley said that cancer treatment saves lives, but addressing the adverse effects linked to cancer treatment also saves lives and enables survivors to fully live their lives. She emphasized that initiatives and policies to improve communication and change care delivery can be implemented now to help the 17 million cancer survivors in the United States, while initiatives to improve research and data infrastructure will help prevent future problems for the growing number of patients who survive a cancer diagnosis.
From page 50...
... 2016. Cardiovascular disease mortality among breast cancer survivors.
From page 51...
... 2019. Subsequent breast cancer in female childhood cancer survivors in the St.
From page 52...
... 2003. Childhood cancer survivorship: Improving care and quality of life.
From page 53...
... 2019. Genetic testing and results in a population-based cohort of breast cancer patients and ovarian cancer patients.
From page 54...
... 2017. Head and neck cancer survivorship care guideline: American Society of Clinical Oncology clinical practice guideline endorsement of the American Cancer Society guideline.
From page 55...
... 2015. Prostate cancer survivorship care guideline: American Society of Clinical Oncology clinical practice guideline endorsement.
From page 56...
... 2016. To be young, black, and living with breast cancer: A systematic review of health-related quality of life in young black breast cancer survivors.
From page 57...
... 2018. Medical financial hardship among cancer survivors in the United States: What do we know?


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