Unmet need for healthcare services in adolescents and young adults with cancer and their parent carers
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Cancer in adolescents in and young adults (AYA) has the potential to disrupt health, well-being and developmental trajectories. This study aimed to describe the healthcare support service needs of AYAs with cancer and parent carers and to explore the association of unmet need and emotional distress.
As part of a national Australian survey of 15–25 year olds with cancer and a nominated parent carer, 196 AYAs reported total and unmet need for 10 clinical services and 204 parents reported on their child’s and their own healthcare service needs. Proportions of total and unmet need for specific clinical services are reported. The association of unmet service needs and distress (measured using the Posttraumatic Stress Disorder Checklist) was also examined.
AYAs and parent carers expressed high total need for clinical services during treatment. Leading AYA unmet needs were for an exercise therapist (37%), genetic counsellor (30%), dietitian (26%), peer support group (26%) and educational and vocational advisor (24%). After treatment, AYAs and parents had fewer total needs. However, 60% of AYA and 38% of parents had two or more unmet needs, similar to during treatment. Female gender and receiving treatment in an adult setting were significantly associated with unmet need for clinical services. After treatment, higher distress levels in AYAs and parents were associated with two or more unmet service needs.
AYAs and parents had high levels of total and unmet service need, which were associated with greater emotional distress. These results highlight opportunities to re-orientate services to better meet AYA and parent needs.
KeywordsCancer Adolescent and young adult Unmet needs Emotional distress Psychosocial support
We wish to acknowledge the generosity of the Australian young people and their families who participated in this study. This project was funded by a grant from Cancer Australia (APP1010977) in association with Beyond Blue and Canteen through the Priority-Driven Collaborative Cancer Research Scheme. Additional funding was gratefully received from Redkite, the Royal Children’s Hospital Foundation, ONTrac Adolescent & Young Adult Cancer Service, Peter MacCallum and the Victorian Department of Health (Cancer Strategy and Planning branch). Dr. McCarthy is funded via a Murdoch Childrens Research Institute Career Development Award. The Murdoch Childrens Research Institute is supported by the Victorian Government’s Operational Infrastructure Support Program.
Compliance with ethical standards
Conflict of interest
The authors declare that they have no conflict of interest.
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