Identifying and describing cancer survivors: Implications for cancer survivorship research and clinical care.

BACKGROUND: Gathering information directly from cancer survivors has advanced our understanding of the cancer survivorship experience. However, it is unknown whether surveys can distinguish important subgroups of cancer survivors. This study aimed to describe the current landscape of survey questions used to identify and describe cancer survivors in national cross-sectional studies. METHODS: Using publicly available databases, the authors identified national cross-sectional surveys used in the United States within the past 15 years that included a question on self-reported history of cancer. After abstracting questions and response items used to identify cancer survivors, they conducted a descriptive analysis. RESULTS: The authors identified 14 national cross-sectional surveys, with half administered to the general population and the other half administered to cancer survivors. The most common question used to identify cancer survivors was "Have you ever been told by a doctor or other health professional that you had cancer?" Most surveys had questions asking participants to identify a single cancer type (n = 11), multiple prior cancer diagnoses or types (n = 11), and the time from diagnosis (n = 12). Treatment questions varied from active treatment status to specific treatments received. Questions addressing cancer stage (n = 2), subtypes (n = 1), metastatic status (n = 3), and recurrence (n = 4) were less frequently included. CONCLUSIONS: There is no standard method for assessing self-reported cancer history, and this limits the ability to distinguish among potentially important subgroups of survivors. Future cross-sectional surveys that capture nuanced data elements, such as cancer types, stages/subtypes, metastatic/recurrent status, and treatments received, can help to fill important gaps in cancer survivorship research and clinical care.

Developing national cancer survivorship standards to inform quality of care in the United States using a consensus approach.

PURPOSE: To develop United States (US) standards for survivorship care that informs (1) essential health system policy and process components and (2) evaluation of the quality of survivorship care. METHODS: The National Cancer Institute and the Department of Veterans Affairs led a review to identify indicators of quality cancer survivorship care in the domains of health system policy, process, and evaluation/assessment. A series of three virtual consensus meetings with survivorship care and research experts and advocates was conducted to rate the importance of the indicators and refine the top indicators. The final set of standards was developed, including ten indicators in each domain. RESULTS: Prioritized items were survivor-focused, including processes to both assess and manage physical, psychological, and social issues, and evaluation of patient outcomes and experiences. Specific indicators focused on developing a business model for sustaining survivorship care and collecting relevant business metrics (e.g., healthcare utilization, downstream revenue) to show value of survivorship care to health systems. CONCLUSIONS: The National Standards for Cancer Survivorship Care can be used by health systems to guide development of new survivorship care programs or services or to assess alignment and enhance services in existing survivorship programs. Given the variety of settings providing care to survivors, it is necessary for health systems to adapt these standards based on factors including age-specific needs, cancer types, treatments received, and health system resources. IMPLICATIONS FOR CANCER SURVIVORS: With over 18 million cancer survivors in the United States, many of whom experience varied symptoms and unmet needs, it is essential for health systems to have a comprehensive strategy to provide ongoing care. The US National Standards for Survivorship Care should serve as a blueprint for what survivors and their families can anticipate after a cancer diagnosis to address their needs.

Cancer Care at the Beginning of the COVID-19 Pandemic: Effects on Patients and Early Interventions to Mitigate Stresses on Care.

PURPOSE: A multidisciplinary panel of experts convened to review the early effects of the COVID-19 pandemic on cancer care in the United States as part of a symposium convened by the National Cancer Policy Forum in July 2021. METHODS: Representatives from the cancer care community, patients, infection prevention, and a government agency provided insight into key elements of the response to and impact of the COVID-19 pandemic on cancer care in the United States in 2020. RESULTS: Multiple stakeholders worked quickly to adapt to provide seamless care to cancer patients with considerable success despite the profound uncertainties that faced us in the early days of the pandemic. DISCUSSION: The experiences of the early days of COVID-19 in the cancer community led to key recommendations toward the goal of preparing for the next major disruption to cancer care. These include increasing competency in emergent technologies, rapid communication, engagement of all key stakeholders in policy decisions, ensuring emergency preparedness, and advocating for permanent regulatory changes to minimize barriers to enable a unified cancer community to provide effective and readily accessible cancer care.

American Society of Clinical Oncology Road to Recovery Report: Learning From the COVID-19 Experience to Improve Clinical Research and Cancer Care.

This report presents the American Society of Clinical Oncology's (ASCO's) evaluation of the adaptations in care delivery, research operations, and regulatory oversight made in response to the coronavirus pandemic and presents recommendations for moving forward as the pandemic recedes. ASCO organized its recommendations for clinical research around five goals to ensure lessons learned from the COVID-19 experience are used to craft a more equitable, accessible, and efficient clinical research system that protects patient safety, ensures scientific integrity, and maintains data quality. The specific goals are: (1) ensure that clinical research is accessible, affordable, and equitable; (2) design more pragmatic and efficient clinical trials; (3) minimize administrative and regulatory burdens on research sites; (4) recruit, retain, and support a well-trained clinical research workforce; and (5) promote appropriate oversight and review of clinical trial conduct and results. Similarly, ASCO also organized its recommendations regarding cancer care delivery around five goals: (1) promote and protect equitable access to high-quality cancer care; (2) support safe delivery of high-quality cancer care; (3) advance policies to ensure oncology providers have sufficient resources to provide high-quality patient care; (4) recognize and address threats to clinician, provider, and patient well-being; and (5) improve patient access to high-quality cancer care via telemedicine. ASCO will work at all levels to advance the recommendations made in this report.

Long-Term Survivorship Care After Cancer Treatment - Summary of a 2017 National Cancer Policy Forum Workshop.

The National Cancer Policy Forum of the National Academies of Sciences, Engineering and Medicine sponsored a workshop on July 24 and 25, 2017 on Long-Term Survivorship after Cancer Treatment. The workshop brought together diverse stakeholders (patients, advocates, academicians, clinicians, research funders, and policymakers) to review progress and ongoing challenges since the Institute of Medicine (IOM)'s seminal report on the subject of adult cancer survivors published in 2006. This commentary profiles the content of the meeting sessions and concludes with recommendations that stem from the workshop discussions. Although there has been progress over the past decade, many of the recommendations from the 2006 report have not been fully implemented. Obstacles related to the routine delivery of standardized physical and psychosocial care services to cancer survivors are substantial, with important gaps in care for patients and caregivers. Innovative care models for cancer survivors have emerged, and changes in accreditation requirements such as the Commission on Cancer's (CoC) requirement for survivorship care planning have put cancer survivorship on the radar. The Center for Medicare & Medicaid Innovation's Oncology Care Model (OCM), which requires psychosocial services and the creation of survivorship care plans for its beneficiary participants, has placed increased emphasis on this service. The OCM, in conjunction with the CoC requirement, is encouraging electronic health record vendors to incorporate survivorship care planning functionality into updated versions of their products. As new models of care emerge, coordination and communication among survivors and their clinicians will be required to implement patient- and community-centered strategies.

Lessons From Early Implementation of a Patient-Centered Care Model in Oncology.

PURPOSE: Oncology practices may serve as the primary health provider for patients with cancer and the so-called neighbor during periods of transition and survivorship. New standards for patient-centered oncology practice articulate expectations for the primary health provider and neighbor roles. We report the implementation experiences of five oncology practices participating in a pilot of these standards. METHODS: For each practice, auditors reviewed workflows and documentation supporting the progress of the practice in meeting the oncology medical home standards. We also observed clinical encounters and practice workflow and interviewed clinicians, staff, and patients. RESULTS: Referral coordination and care management were the most demonstrated functions. The least commonly demonstrated functions related to tracking and coordination of tests and medications, as well as quality measurement and improvement. Some opportunities for structural and process improvement included improving the use of health information technology, care coordination, quality improvement, telephone triage, symptom management, patient education, financial counseling, and care team communication. Making patient-centered care a priority and motivation to change were cited as facilitators for transformation. CONCLUSION: The pilot oncology practices had many structures and processes in common, many of which were established during the early intervention period of this pilot. However, there was little standardization within and across practices in the way these processes were established and documented. Establishing structures for care coordination, quality improvement, and quality measurement should be priorities for practices considering transformation to a patient-centered model of care.

Adaptive clinical trial designs for simultaneous testing of matched diagnostics and therapeutics.

A critical challenge in the development of new molecularly targeted anticancer drugs is the identification of predictive biomarkers and the concurrent development of diagnostics for these biomarkers. Developing matched diagnostics and therapeutics will require new clinical trial designs and methods of data analysis. The use of adaptive design in phase III trials may offer new opportunities for matched diagnosis and treatment because the size of the trial can allow for subpopulation analysis. We present an adaptive phase III trial design that can identify a suitable target population during the early course of the trial, enabling the efficacy of an experimental therapeutic to be evaluated within the target population as a later part of the same trial. The use of such an adaptive approach to clinical trial design has the potential to greatly improve the field of oncology and facilitate the development of personalized medicine.