Defining cancer survivor and cancer survivorship: the who, what, and when

Abstract

Over the past three decades various definitions of cancer survivor and cancer survivorship have been proposed. These definitions frequently describe (1) who is considered a cancer survivor and who is experiencing cancer survivorship, (2) what it means to a be survivor and experience survivorship, and (3) when someone is considered a survivor and when survivorship begins. Descriptive epidemiology indicates that certain individuals diagnosed and treated for cancer describe the presence of specific unmet needs following diagnosis and treatment for cancer. Evidence also points to an increased likelihood of cancer recurrence or a new cancer in many cancer patients. These observations should be reflected in the case definitions of cancer survivor and cancer survivorship. This paper reviews the literature for evidence to validate existing definitions of cancer survivor and cancer survivorship and proposes updated definitions for each. Based on this evidence, a cancer survivor is defined as an individual diagnosed with cancer. The period following primary treatment, which is characterized by transitions in care and a need to address the late effects of cancer and its treatment, may be a particularly critical time for the cancer survivor. The definition does not preclude the major involvement of family, friends, caregivers, and providers, but does place the focus on the individual who received the diagnosis of cancer. Children and young adult cancer survivors should be housed in subgroups under the “cancer survivor” umbrella. In addition, cancer survivorship is defined as the period of time beginning at cancer diagnosis where attention by the survivor and his or her care team is directed at addressing needs related to health, symptoms, function, lifestyle, and well-being; these needs may change through the care trajectory. Coordination of care between oncologist specialists involved in the early phases of cancer diagnosis and treatment and primary care physicians involved in longterm follow-up is critical. As new knowledge is acquired regarding cancer survival and the cancer experience, modifications to these proposed definitions will be imperative.