Categorization of Cancer Survivors: Why We Need It

Longtermsurvivor

Fascinating article worth reading in its entirety, linked through the title:

Categorization of Cancer Survivors: Why We Need It

The number of people diagnosed with cancer who live longer than 5 years from diagnosis or end of acute treatment, along with the number of patients who live with cancer in a chronic state, is increasing in industrialized countries. Consequently, survivorship care is now an established branch of oncology and is a growing health care and research priority. Yet, several gaps in the contemporary study of survivorship were identified through an American Society of Clinical Oncology (ASCO) electronic survey of 679 members who acted as principal or coprincipal investigators of survivorship-related studies and of 838 professionals engaged in survivorship research at National Cancer Institute–designated cancer centers.¹ Identified gaps included the predominance of breast cancer studies, limited research on older survivors, persistent research dearth of long-term (> 5 years) survivors, lack of intervention studies on young survivors, and areas of deficiency in research objectives, such as biologic or genetic components and care delivery.¹

An additional gap in survivorship care and research remains unaddressed—identification of categories of cancer survivors on the basis of clinical and epidemiologic data to provide better tailored care to people who are now lumped together under the umbrella of cancer survivors. In this article, we analyze the reasons for the categorization of cancer survivors and the benefits that may be derived from clinical and organizational categorizations intended to increase physical and psychosocial well-being of patients in a global sociocultural perspective.

Cancer changes people's lives, from the time of diagnosis through and beyond treatment. The expression cancer survivor was coined in 1985 by physician and cancer patient Fitzhugh Mullan to describe the multiple medical and psychosocial needs and concerns as well as the shifts in interpersonal roles and dynamics that accompany patients with cancer and their loved ones for the rest of their lives.² The definition by Mullan was adopted by the National Coalition for Cancer Survivors in 1986 and later extended to everyone who has been touched by cancer.³ Subsequently endorsed by all major cancer organizations in the United States, including ASCO, this definition has strong appeal in the United States and other cultures in which the term survivor carries a positive connotation related to resilience. In other countries and cultures, however, survivor is often regarded as an unwelcome label that equates a person's identity with illness.^4,5 Furthermore, even within Anglo-American countries, patients and professionals who work in the field do not fully embrace the original definition of cancer survivor for multiple reasons, including its murkiness or failure to capture or reflect the individual experiences of cancer survivors—a group that includes some who have been disease free for many years and who wish to put their histories of cancer behind them and others whose lives fluctuate between phases of disease remission and relapse that require constant or repeat treatments.^6-20 This inherent complexity may preclude any universal definition or categorization that encompasses the diversity of cancer survivors.²¹ Yet, we must strive to fill the gap between the almost-universal reality described by Mullan of psychological and relational changes that start with a cancer diagnosis and persist forever, regardless of the clinical outcome, and the highly heterogeneous clinical reality and needs of different cancer survivors.

To develop optimal survivorship care models and guidelines, ASCO recently adopted a functional definition of long-term survivorship as "individuals who have successfully completed curative treatment or…transitioned to maintenance or prophylactic therapy."^4(p632) A similar definition was applied by ASCO to long-term survivors who survive ≥ 5 years after diagnosis; in research, of the 64% of current survivors, 67% received a diagnosis as adults, and 80% received a diagnosis as children.¹ A stricter functional definition is needed, because consideration of a survivor as any person touched by cancer from the time of diagnosis to end of life implicitly recognizes that not all survivors are alike in their lifetime clinical course and should not be lumped together for the purpose of communication, clinical management, or modalities of survivorship care delivery.

http://jco.ascopubs.org/content/34/28/3372?cmpid=jco_etoc_1October2016#.V-Pwr-hgQ3Q.email