Defining concepts in cancer survivorship

Abstract

The National Cancer Institute’s Office of Cancer Survivorship (OCS) was established in 1996 in response to a call from survivor advocates, in recognition of the growing number of people surviving cancer for long periods of time and their poorly understood needs. The mission of OCS is to support research that examines and addresses the long- and short-term physical, psychological, social, and economic effects of cancer and its treatment among survivors of all ages and stages and their caregivers and families.¹ This work is accomplished by 1) advancing scientific research; 2) supporting investigators and training to foster a robust network of extramural cancer survivorship research leaders; 3) communicating and collaborating with internal and external survivorship experts; and 4) promoting continued growth and sustained improvement in cancer survivorship care.

Survivor advocates, who saw the creation of OCS as a culmination of their efforts, also started a movement in calling themselves cancer survivors. Concurrently, researchers began to learn more about concerns and needs related to treatment and survivorship. For cancer survivors, advocates, and researchers, OCS has and continues to serve as the lead in developing a taxonomy of key concepts related to cancer survivorship and caregiving. The purpose of this article is to provide an update on common definitional terms, including cancer survivor, cancer survivorship, cancer survivorship care, and cancer survivorship research. These definitions were developed through a consensus process that included a comprehensive review of the literature and meetings with survivor advocates and subject matter experts.

An individual is considered a cancer survivor from the time of diagnosis through the balance of life,^{2, 3} and it is recognized that people experience a cancer diagnosis alongside the many events and phases of their lives (Figure 1). There are many types of survivors, including those living with cancer and those free of cancer. This term is meant to encompass the population with a history of cancer rather than to assign an individual label that may or may not resonate with all survivors. Although each individual’s experience as a survivor is unique, there are different types of cancer survivors, including those who are diagnosed with early-stage cancer, those who are diagnosed with advanced or metastatic cancer or who progress to metastatic cancer, and those who are diagnosed with or progress to end-stage cancer.⁴ Goals of care for survivors, including being treated for curative intent or to maximize quality of life, may vary based on several factors, including cancer type, treatment(s) received, age, and prognosis.

Cancer survivorship is a complex state of being. It includes the perspectives, needs, health, and the physical, psychological, social, and economic challenges experienced by survivors and caregivers after a cancer diagnosis (Figure 2).²

This care is often delivered by multiple types of health care providers, with a goal of providing comprehensive, needs-based care to people after a cancer diagnosis.

Research focused on cancer survivorship aims to enhance the health and well-being of all cancer survivors and caregivers (Figure 4).² This research area aims to understand, prevent, and mitigate acute and late-occurring physical, psychological, social, and economic effects of cancer and its treatment, improve care delivery, promote healthy behaviors (e.g., diet and physical activity, smoking cessation, and preventive care), develop and sustain research infrastructure (e.g., data repositories, research hubs, and biospecimen collection), and improve research methodologies for individuals impacted by cancer. Additionally, research on the multilevel contextual factors that influence aspects of cancer survivorship, including factors related to health policy, health care payer, community, health care system, care team, and survivor and caregiver characteristics (e.g., socioeconomic status, sex, and race/ethnicity), are included in the definition of cancer survivorship research.

With over 18 million cancer survivors in the United States,⁶ we recognize that the terms survivor and survivorship may not resonate with all people with a history of cancer. Instead, these definitions are meant to capture a population or associated phenomena that can be used by survivor advocates and organizations to inform research, clinical care, and health policy. It is likely that these terms and their meanings will evolve over time with advances in our understanding of the needs and perspectives of cancer survivors.

Michelle A. Mollica: Conceptualization; writing—original draft; writing—review and editing. Michelle Doose: Writing—review and editing. Crystal Reed: Writing—review and editing. Emily Tonorezos: Conceptualization; writing—review and editing.

Emily Tonorezos reports fees for professional activities from Weill Cornell Medicine. The other authors declare no conflicts of interest.