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J Adolesc Young Adult Oncol. 2018 Jun;7(3):315-325. doi: 10.1089/jayao.2017.0104. Epub 2018 Jan 22.

Experiences of Care of Adolescents and Young Adults with Cancer in Australia.

Author information

1
1 Centre for Behavioural Research in Cancer , Cancer Council Victoria, Victoria, Australia .
2
2 School of Psychology, Deakin University , Victoria, Australia .
3
3 School of Psychology and Public Health, La Trobe University , Victoria, Australia .
4
4 Olivia Newton-John Cancer Wellness and Research Centre , Austin Health, Victoria, Australia .
5
5 Peter MacCallum Cancer Centre , Victoria, Australia .
6
6 Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne , Victoria, Australia .
7
7 Children's Health Queensland Hospital and Health Service , Queensland, Australia .
8
8 Children's Cancer Centre, The Royal Children's Hospital , Victoria, Australia .
9
9 Murdoch Children's Research Institute , Victoria, Australia .
10
10 Princess Margaret Hospital for Children , Western Australia, Australia .
11
11 Royal Adelaide Hospital , South Australia, Australia .
12
12 Royal Hobart Hospital , Tasmania, Australia .
13
13 Kids Cancer Centre, Sydney Children's Hospital , New South Wales, Australia .
14
14 Nelune Comprehensive Cancer Centre, Prince of Wales Hospital , New South Wales, Australia .
15
15 School of Women's and Children's Health University of New South Wales , New South Wales, Australia .

Abstract

PURPOSE:

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.

METHODS:

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.

RESULTS:

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.

CONCLUSION:

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.

KEYWORDS:

experiences of care; patient experience; psychosocial

PMID:
29356588
DOI:
10.1089/jayao.2017.0104

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