410P Who is a cancer survivor? a study into the lay understanding of cancer identity using a crowdsourced population

Abstract

Aim/Background: Research has shown that the term “cancer survivor” is not uniformly endorsed or interpreted in the same way by individuals who have received a cancer diagnosis. Due to increasing survial rates and a rising number of caregivers, it is important to examine public understanding and, hence, this study explores the lay understanding of this term and its relevance compared to other types of cancer identities. Methods: 263 participants from the United States of America with no previous history of cancer were crowdsourced through Crowdflower and completed an online survey. They were asked to consider which cancer identity best described individuals 1) at cancer diagnosis, 2) upon completion of primary treatment, and 3) in remission for 5 years or more. They were also asked whether a close person of an individual diagnosed with cancer is a “cancer survivor”, and to provide their opinion on this term. Results: The majority of participants (39.9%) considered “someone who has cancer” to be the most appropriate phrase to describe someone who has just received a cancer diagnosis. Most (39.2%) felt that the phrase “a cancer patient” best described an individual who has finished primary treatment. For an individual in remission for 5 years or more, 57.4% chose the phrase “a cancer survivor”. 65.0% disagreed that a close person of an individual diagnosed with cancer is a “cancer survivor”. 248 participants provided a definition on the term “cancer survivor”. The top 5 recurring themes were of someone being cancer free or in remission (31.9%), fighting or beating cancer (27.4%), having undertaken treatment (24.0%), surviving cancer and/or treatment (19.4%), and surviving for a period of time since treatment (8.4%) with the most frequent time period specified to be 5 years (3.4%). Conclusions: This study provided a greater understanding of how people without a personal cancer history may perceive certain cancer terminology and how this understanding differed from the definitions put forth by cancer advocacy organisations like the National Coalition for Cancer Survivorship. Findings of this study may assist in improved communication within the health sector.