title: Fulfilling the Vision of Youth-Friendly Cancer Care: A Study Protocol.
abstract: There is growing evidence about the extent that cancer in adolescents and young adults (AYAs) can interrupt normal developmental trajectories, which places the onus on cancer services to buffer these impacts. This article reports the protocol of a four-stage study that aimed to establish how well Australian cancer treatment services are providing youth-friendly cancer care, that is, quality care that best meets young people's needs. The overall goal of this study is to develop an evidence-informed model of cancer care for this age group.
  
  
  
  Eligible patients were 15-25 years old and 6-24 months from a cancer diagnosis, and a nominated carer. Stage 1 consisted of in-depth, semi-structured interviews. Qualitative analysis identified the major domains affected by cancer. Stage 2 was the development of a survey tool for AYA and parents to measure these domains, compiled from validated instruments of: psychological distress; post-traumatic growth; quality of life; social support; quality of services, information, and needs; physical, psychological, and social needs; self-management; and experience of care, as well as questions covering additional domains (e.g., fertility preservation). Stage 3 was a national survey of AYAs and parents. This information will inform the development of a program model, to be refined by stakeholder consultation in Stage 4.
  
  
  
  Analysis of these data will inform how well cancer services meet the needs of AYAs and their parents around clinical services and psychosocial supports, the physical environment, and information, with the ultimate goal of informing a program model of AYA cancer care.
authors.affiliation: 1 Centre for Adolescent Health, Royal Children's Hospital , Parkville, Australia .|2 Department of Pediatrics, The University of Melbourne , Parkville, Australia .|3 Murdoch Childrens Research Institute , Parkville, Australia .
authors.forename: Susan M
authors.initials: SM
authors.lastname: Sawyer
authors.affiliation: 3 Murdoch Childrens Research Institute , Parkville, Australia .|4 Children's Cancer Centre, Royal Children's Hospital , Parkville, Australia .
authors.forename: Maria C
authors.initials: MC
authors.lastname: McCarthy
authors.affiliation: 5 School of Population and Global Health, The University of Melbourne , Parkville, Australia .
authors.forename: David
authors.initials: D
authors.lastname: Dunt
authors.affiliation: 1 Centre for Adolescent Health, Royal Children's Hospital , Parkville, Australia .|2 Department of Pediatrics, The University of Melbourne , Parkville, Australia .|3 Murdoch Childrens Research Institute , Parkville, Australia .
authors.forename: Robyn
authors.initials: R
authors.lastname: McNeil
authors.affiliation: 6 ONTrac at Peter Mac Victorian Adolescent and Young Adult Cancer Service, Peter MacCallum Cancer Centre , East Melbourne, Australia .
authors.forename: Kate
authors.initials: K
authors.lastname: Thompson
authors.affiliation: 4 Children's Cancer Centre, Royal Children's Hospital , Parkville, Australia .|6 ONTrac at Peter Mac Victorian Adolescent and Young Adult Cancer Service, Peter MacCallum Cancer Centre , East Melbourne, Australia .
authors.forename: Lisa
authors.initials: L
authors.lastname: Orme
authors.affiliation: 1 Centre for Adolescent Health, Royal Children's Hospital , Parkville, Australia .|2 Department of Pediatrics, The University of Melbourne , Parkville, Australia .
authors.forename: Sarah E
authors.initials: SE
authors.lastname: Drew
mesh_terms: D000293:Adolescent; D000328:Adult; D017028:Caregivers / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology*; D012944:Social Support; D055815:Young Adult
keywords: carer; depression; epidemiology; psychosocial; quality of life; supportive care