Rapid Fire Best of the Best Oral Clinical Oncology Society of Australia Annual Scientific Meeting 2023

Do young people who survive cancer, identify as ‘survivors’? Prevalence and predictors of cancer-related identities among adolescents and young adults following cancer. (#483)

Ursula M Sansom-Daly 1 2 3 , Sarah Ellis 1 2 , Kate Hetherington 1 2 , Brittany C McGill 1 2 , Holly E Evans 1 2 , Clarissa E Schilstra 1 2 , Mark W Donoghoe 1 2 , Richard J Cohn 1 2 , Antoinette Anazodo 2 4 , Claire E Wakefield 1 2
  1. Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospital, Randwick, NSW, Australia
  2. School of Clinical Medicine, UNSW Medicine and Health, UNSW Sydney, Kensington, NSW, Australia
  3. Sydney Youth Cancer Service, Prince of Wales/Sydney Children's Hospitals, Randwick, NSW, Australia
  4. Kids Cancer Centre, Sydney Children's Hospital, Randwick, NSW, Australia

Background: Cancer significantly impacts adolescents’ and young adults’ (AYAs’) identity.1 Little is known about whether AYAs adopt a ‘cancer survivor’ identity, and whether a ‘survivor-centric’ identity is linked with psychological outcomes into survivorship.1,2

Objective: To explore prevalence and predictors of AYAs’ cancer-related identity preferences in survivorship, and examine associations with their psychological adjustment.

Method: Across two studies, two items explored AYAs’ cancer-related identity preferences: firstly, using a 10-point sliding-scale, and then with seven categorical label-options (e.g., ‘cancer survivor’, ‘victim of cancer’), alongside psychological measures (Depression and Anxiety Scale-Short;3 Centrality of Events;4 Impact of Cancer5). Study 1’s cross-sectional questionnaire-design compared AYAs in survivorship, with controls (who appraised non-cancer illness experiences). Study 2 enabled observation of AYAs’ cancer-identity preferences over a 12-month period following treatment-completion, within the Recapture Life intervention randomised-trial.6,7

Results: Study 1: AYAs with a cancer history endorsed more ‘survivor-centric’ identity than controls (p<.001). Greater perceived cancer-centrality, and lower depression, predicted greater survivor-identity (p=.001). Study 2: At baseline, AYAs preferred the term ‘cancer survivor’ (mean=7.4, SD=1.9), with ‘cancer survivor’ chosen most frequently (35%), followed by ‘had cancer once, but is fine now’ (20%). Twelve months later, ‘survivor’ was still most endorsed, but only by 25% of AYAs. Most  AYAs (60%) identified with more than one identity-label - at times simultaneously. No significant relationships between survivor-identity, anxiety or depression emerged. A positive linear relationship indicated that more survivor-centric identity was correlated with AYAs perceiving more positive impacts of cancer, over time (r=.27;p=0.009).

Conclusions: When given choices, AYAs identified with diverse cancer-identities, and only a minority endorsed the ‘survivor’ label. AYAs’ self-identification as a ‘survivor’ may be linked with their perceptions of cancer’s impact in their lives into survivorship. This talk will consider how clinicians, researchers, and communities may support an AYA-led approach to framing the cancer survivorship experience for – and with –  AYAs.

  1. Sansom-Daly UM, Wakefield CE, Robertson EG, McGill BC, Wilson HL, Bryant RA. Adolescent and young adult cancer survivors' memory and future thinking processes place them at risk for poor mental health. Psychooncology. 2018;27(12):2709-16.
  2. Cheung SY, Delfabbro P. Are you a cancer survivor? A review on cancer identity. J Cancer Surviv 10:759–771, 2016
  3. Lovibond SH, Lovibond PF. Manual for the Depression Anxiety Stress Scales (ed 2nd). Sydney, Psychology Foundation, 1995
  4. Berntsen D, Rubin DC. The centrality of event scale: A measure of integrating a trauma into one's identity and its relation to post-traumatic stress disorder symptoms. Behav Res Ther 44:219-231, 2006
  5. Zebrack BJ, Donohue JE, Gurney JG, et al. Psychometric evaluation of the impact of cancer (IOC-CS) scale for young adult survivors of childhood cancer. Qual Life Res 19:207-218, 2010
  6. Sansom-Daly UM, Wakefield C, Bryant R, Butow P, Sawyer S, Patterson P, et al. Online group-based cognitive-behavioural therapy for adolescents and young adults after cancer treatment: A multicenter randomised controlled trial of Recapture Life-AYA. BMC Cancer. 2012;12(1):339.
  7. Sansom-Daly UM, Wakefield CE, Ellis SJ, McGill BC, Donoghoe MW, Butow P, et al. Online, Group-Based Psychological Support for Adolescent and Young Adult Cancer Survivors: Results from the Recapture Life Randomized Trial. Cancers (Basel). 2021;13(10):2460.