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Title: Experiences of Care of Adolescents and Young Adults with Cancer in Australia.
Austin Authors: White, Victoria;Skaczkowski, Gemma ;Thompson, Kate;Bibby, Helen;Coory, Michael;Pinkerton, Ross;Nicholls, Wayne;Orme, Lisa M;Conyers, Rachel;Phillips, Marianne B;Osborn, Michael;Harrup, Rosemary;Anazodo, Antoinette
Affiliation: Centre for Behavioural Research in Cancer, Cancer Council Victoria, Victoria, Australia
School of Psychology, Deakin University, Victoria, Australia
School of Psychology and Public Health, La Trobe University, Victoria, Australia
Olivia Newton-John Cancer Wellness and Research Centre, Austin Health, Victoria, Australia
Peter MacCallum Cancer Centre, Victoria, Australia
Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne, Victoria, Australia
Children's Health Queensland Hospital and Health Service , Queensland, Australia
Children's Cancer Centre, The Royal Children's Hospital, Victoria, Australia
Murdoch Children's Research Institute, Victoria, Australia
Princess Margaret Hospital for Children, Western Australia, Australia
Royal Adelaide Hospital, South Australia, Australia
Royal Hobart Hospital, Tasmania, Australia
Kids Cancer Centre, Sydney Children's Hospital , New South Wales, Australia
Nelune Comprehensive Cancer Centre, Prince of Wales Hospital , New South Wales, Australia
School of Women's and Children's Health University of New South Wales , New South Wales, Australia
Issue Date: 2018 2018-01-22
Publication information: Journal of adolescent and young adult oncology 2018; 7(3): 315-325
Abstract: To examine the care experiences of Australian Adolescents and Young Adults (AYAs) with cancer during a period when youth cancer services (YCS) were developing across the country. A cross-sectional, self-report survey completed by 207 recently diagnosed AYAs with cancer, recruited from the population-based cancer registries of Australia's two most populous states. AYAs were 15 to 24 years old when diagnosed with any form of cancer (except melanoma <3 mm or stage I/II). Respondents indicated whether certain events/experiences occurred at various points along the cancer care pathway and the treatment centers attended. Treatment centers with YCS were identified. Participating AYAs were an average of 9 months post-diagnosis. AYAs were treated in over 60 centers, with only 31% attending YCS. While experiences relating to delivery of treatment were generally positive, supportive care experiences and emotional support were missing for many. Information provision at the end of treatment was low, with 60% not receiving a treatment summary and 50% not receiving a written follow-up care plan. In addition, 42% never/rarely received information relevant to their age, and only 54% reported that healthcare professionals definitely checked their understanding of the information provided. AYAs attending YCS were more likely to report age-appropriate treatment settings, information provision, and emotional support. While care experiences were generally positive for most AYAs, attending YCS was associated with better communication and supportive care experiences. As only a third of the AYAs surveyed attended these services, efforts are needed to increase AYA access to YCS.
DOI: 10.1089/jayao.2017.0104
PubMed URL: 29356588
Type: Journal Article
Subjects: experiences of care
patient experience
Appears in Collections:Journal articles

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