National Standards for Cancer Survivorship Care

The National Cancer Institute (NCI), in partnership with the Department of Veterans Affairs (VA) and other Health and Human Services Agencies, led a consensus-building process with subject matter experts to develop the National Standards for Cancer Survivorship Care. This collaboration defined standards for (1) essential health system policy and process components of survivorship care programs; and (2) evaluation of the quality of survivorship care. The effort was undertaken as part of the Biden Cancer Moonshot, President Biden’s whole of government response to accelerate progress against cancer and end cancer as we know it, and the President’s Cancer Cabinet.

This project was co-chaired by Michelle Mollica, PhD, MPH, RN, OCN, deputy director of the National Cancer Institute Office of Cancer Survivorship (OCS); Gina McWhirter, MBA, MSN, RN, director of National TeleOncology at the VA; and Vida Passero, MD, MBA, chief medical officer of National TeleOncology at the VA.

Background

Cancer survivors have unique needs. Many survivors experience physical and psychosocial symptoms during and long after their treatment has ended. In addition, they are at risk for recurrence of their cancer and subsequent cancers, and often need support to promote healthy behaviors (e.g., avoiding smoking and excessive alcohol use, and increasing physical activity). As a result, most survivors require long-term follow-up care to manage their diverse needs.

Survivorship care is complex and multifaceted and includes prevention and detection of recurrence and new cancers, monitoring and amelioration of symptoms related to cancer and its treatment, and management of chronic conditions. These components of care necessitate coordination, often among multiple providers. Though recommendations and long-term follow-up guidelines do exist for some cancers (e.g., breast, colorectal, head and neck, and childhood cancers), the delivery of survivorship care, including who delivers the care (e.g., oncologist, primary care provider, or other healthcare provider) and what care is delivered, varies widely based on care setting, geographical area, and personal resources. In some cases, survivors receive long-term follow-up care delivered by their oncologist, which is not sustainable nor appropriate for many survivors, given the overburdened workforce. Other survivors may receive follow-up care from their primary care provider, which also has challenges, including the fact that providers often do not have actionable information on diagnosis, treatment history, or recommendations for follow-up care.

Current survivorship care for many people is suboptimal, leaving survivors with persistent symptoms, unmet needs, and lack of access to comprehensive survivorship care. Overall, the lack of a national standard for cancer survivorship care has impeded research and clinical care, especially related to supporting reimbursement, measuring care quality, and ensuring equitable care for all survivors. These and other factors led to a pressing need to define a national standard for quality survivorship care in the United States.

Announcement of the National Standards for Cancer Survivorship Care

In spring 2024, NCI and other Health and Human Services agencies announced the National Standards for Cancer Survivorship Care. This announcement coincided with this published article in the Journal of Cancer Survivorship: Developing National Cancer Survivorship Standards to Inform Quality of Care in the United States Using a Consensus Approach.

Cancer survivorship care standards represent recommendations for health systems to apply to the survivors they serve. These new standards can be utilized to assess the quality of existing survivorship care and to guide the development of new programs.

Process to Develop Standards

A list of potential indicators was developed through a comprehensive review of survivorship and cancer-specific guidelines, the Commission on Cancer survivorship standard, existing survivorship quality frameworks, U.S. state cancer control plans, and relevant literature. NCI and VA held three iterative, virtual meetings with survivorship subject matter experts to prioritize the most important and feasible indicators and identify additional indicators; input was also solicited from meeting observers. The final set of indicators was then developed. The National Standards for Cancer Survivorship Care are available on the NCI OCS website for health systems and organizations to assess survivorship care quality and align current and future survivorship services.

Key Definitions

• Cancer survivor: any individual from the time of a cancer diagnosis through the balance of life
• Health system policy: principles and procedures guiding an organization’s capacity and structure to provide survivorship care
• Health system process: an organization’s capacity to deliver survivorship care through its embedded practices and procedures
• Assessment/evaluation: measurement of the impacts of survivorship care within an organization

Meeting Recordings

• Meeting 1 (November 29, 2023)
• Meeting 2 (December 6, 2023)
• Meeting 3 (December 12, 2023)

National Standards for Cancer Survivorship Care

Health System Policy

The organization has a policy that includes...

establishment or existence of a survivorship program either on-site, through telehealth, or by referral

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a framework for the provision of survivorship care informed by survivor stakeholders and relevant survivorship guidelines (e.g., American Society of Clinical Oncology, National Comprehensive Cancer Network, Children’s Oncology Group)

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a description of multidisciplinary care, including each team member's specific roles and responsibilities and workflow(s) for referrals to team members

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an overview of how to stratify and refer survivors to appropriate models of care based on age, treatments, and risk factors

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description of the approach and timing of transitions in survivorship care and shared care (e.g., pediatric to adult providers and settings, oncology team to survivorship team and/or primary care) and efforts to prevent/mitigate loss to follow-up care

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an outline for the provision of information for support services (e.g., navigators, social work, interpreters) for survivors based on their needs (including but not limited to health, insurance, and financial literacy, disability status), including survivors from diverse and underserved backgrounds

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identification of an executive-level survivorship care lead (with succession plan) whose role is to ensure compliance with standards, with reporting to an appropriate executive committee

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collection of longitudinal data on survivors' experience of survivorship care and patient-reported outcomes

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requirements and methods for training healthcare providers (either on-site or through an external training program) to deliver survivorship care within their scope of practice

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a business case/plan, including budget, with funding allocated for survivorship care

Health System Processes

Cancer survivors are... 

provided with access and referral to a survivorship program that addresses the needs of cancer survivors either on-site, through telehealth, or by referral

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assessed at multiple points in their follow-up care for physical effects during and following cancer treatment, including monitoring for late effects and chronic conditions, and provided with treatment and/or referrals

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provided with access to appropriate specialty care services to manage potential late effects (e.g., cardiovascular issues) either on-site, through telehealth, or by referral

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assessed at multiple points in their follow-up care for emotional and psychological effects of cancer and its treatment and provided with treatment and/or referrals

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assessed for practical and social effects of cancer and its treatment (e.g., social risks, health-related social needs, education and employment/return to work or school) and provided with resources and/or referrals

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assessed for their risk of recurrence or new cancers, including family history and genetic testing, and provided with recommendations and referrals regarding surveillance for recurrence or new cancers

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assessed for lifestyle behaviors and provided with recommended strategies for management and appropriate referrals or education as needed (e.g., smoking cessation, diet/nutrition counseling, promoting physical activity)

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provided with access and referrals to appropriate supportive health services (e.g., nutrition, occupational and physical therapy, rehabilitation, sexual health, fertility services, dental and podiatry services)

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assessed for financial hardship/toxicity and concerns regarding insurance coverage, and provided with resources and support as needed

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engaged in the care planning process including discussion of shared goals of care, advanced care planning, and coordination of care with providers and services (e.g., primary care provider, other health professionals, and community-based services) as needed

Health System Evaluation/Assessment

The organization has a process to collect data on...

survivors’ patient-reported outcomes, including quality of life, and experiences of survivorship care

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survivors' functional capacity

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survivors' return to previous participation in paid and unpaid work/ school/ productive activities of living

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survival rates (1, 5, and 10-yr) from the time of diagnosis

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rate of recurrence

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rate of subsequent cancers

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number and relevant characteristics (demographics, clinical factors) of survivors lost to follow-up

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caregivers' experiences and unmet needs

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number of health professionals trained to provide survivorship care

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relevant business metrics to show return on investment of survivorship care to the healthcare system (e.g., healthcare utilization, rate of referrals and completion, downstream revenue)