title: An exploratory study of oncology specialists' understanding of the preferences of young people living with cancer.
abstract: Awareness about the specific needs of Adolescents and Young Adults (AYA) aged 15-25 with a diagnosis of cancer has grown rapidly over the past 10 years. To improve outcomes for these patients it is essential that services are developed within youth friendly models. This requires awareness by healthcare professionals of unique biological, genetic, epidemiological, psychological, social, and cultural factors that affect the AYA population. This study sought to explore oncology professionals understanding of the healthcare preferences of AYAs with cancer receiving treatment at a specialist cancer centre. Participants comprised 60 professionals in allied health (n = 15); nursing (n = 32); oncology (n = 6) and those from the Victorian AYA Cancer Service (n = 7). A questionnaire, developed from pilot work, collected demographic information, investigated professionals' top five perceived issues for AYAs, and examined perceptions in the areas of communication; information provision; environment; services; education, employment and social life, fertility and sexuality; support and survivorship. Results illustrate that, with a strong focus on survival and physical wellbeing, professionals significantly underestimate the breadth of AYA psychosocial concerns. The findings further indicate: that young people report different healthcare preferences compared to those reported by professionals; there are varying levels of professional skill, experience and confidence; there are significant workforce development and support needs for professionals; and AYA models of care require rigorous evaluation to ensure the improvement of outcomes for young people living with cancer.
authors.affiliation: Peter MacCallum Cancer Centre, Melbourne, Victoria, Australia. kate.thompson@petermac.org
authors.forename: Kate
authors.initials: K
authors.lastname: Thompson
authors.forename: Gavin
authors.initials: G
authors.lastname: Dyson
authors.forename: Lucy
authors.initials: L
authors.lastname: Holland
authors.forename: Lynette
authors.initials: L
authors.lastname: Joubert
mesh_terms: D000293:Adolescent; D000328:Adult; D001315:Australia; D003142:Communication; D004777:Environment; D005260:Female; D005298:Fertility; D006282:Health Personnel; D006801:Humans; D007398:Interpersonal Relations; D008297:Male; D008495:Medical Oncology; D020380:Needs Assessment; D009369:Neoplasms / Q000175:diagnosis / Q000523:psychology* / Q000628:therapy; D010353:Patient Education as Topic; D057240:Patient Preference; D012959:Socioeconomic Factors; D011795:Surveys and Questionnaires; D014739:Victoria; D055815:Young Adult