The period of adolescence and young adulthood (AYA) is characterised by rapid physiological and psychological change and the accomplishment of key tasks required for a successful transition into adulthood. A cancer diagnosis during these years can markedly disrupt all aspects of development. These young people additionally often face significant long term physical and psychosocial morbidity associated with their diagnosis and treatment. In recognition of the unique impacts of cancer on this patient cohort, AYA oncology services are developing which predominantly address the needs of patients undergoing treatment. To date within Australia there are no formal models of survivorship care (SC) which support young people post-treatment and beyond.
The aim of this project was to better understand the needs and experiences of AYAs with cancer throughout the cancer journey from diagnosis in the transition to post-treatment SC to inform service development.
A comprehensive literature review examining reported survivorship experiences and needs for AYA patients was initially undertaken and used to inform the structure for focus groups. Four groups were held with patients who had experienced a diagnosis of cancer between the ages of 15-25 years. Themes explored during these groups included: the definition of survivorship; experience in transition to post-treatment follow-up care; needs and concerns; what was helpful; what may be improved in relation to service provision and care. Groups were transcribed for analysis.
This paper presents the preliminary findings from the groups and the themes which arose in response to the exploration of patient need and experience. The outcomes of these groups have informed the development of a national Victorian survivorship initiative funded in 2011 by the Victorian Department of Health and run by ONTrac at Peter Mac Victorian Adolescent & Young Adult Cancer Service which aims to improve SC for young people diagnosed with cancer.