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 Resumen Durante las últimas tres décadas se han propuesto diversas definiciones del superviviente de cáncer y la supervivencia del cáncer. Estas definiciones describen con frecuencia (1) quién se considera un superviviente de cán-cer y quién experimenta la supervivencia del cáncer, (2) lo que significa ser superviviente y la experiencia de sobrevivir, y (3) cuándo se considera que alguien es un superviviente y cuándo comienza a ser un superviviente. La epidemiología descriptiva indica que ciertos individuos diagnosticados y tratados de cáncer describen la presencia de necesidades especí-ficas insatisfechas tras el diagnóstico y tratamiento para el cáncer. Los datos disponibles. apuntan a un aumento de la probabilidad de recurrencia del cáncer o un nuevo cáncer en muchos pacientes con cáncer. Estas observaciones deben reflejarse en las definiciones de caso del superviviente de cáncer y la supervivencia del cáncer. Este artículo revisa los datos relativos a la validez de las definiciones existentes de superviviente de cáncer y supervivencia del cáncer y propone definiciones actualizadas para cada uno. Con base en estos hallazgos, se define como superviviente de cáncer a un individuo diagnosticado con cáncer. El periodo que sigue al tratamiento primario, que se caracteriza por las transiciones en el cuidado y la necesidad de abordar los efectos tardíos del cáncer y su tratamiento, puede ser un momen-

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A model of identity grounded in the acute season of survivorship

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