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.
- 14.Smith AW, Parsons HM, Kent EE, Bellizzi K, Zebrack BJ, Keel G, Lynch CF, Rubenstein MB, Keegan THM, AYA HOPE Study Collaborative Group (2013) Frontiers in. Oncology 3(75):1–11Google Scholar
- 15.Keegan THM, Lichtensztajn DY, Kato I, Kent EE, Wu X-C, West MM, Hamilton AS, Zebrack B, Bellizzi KM, Smith AW, the AYA HOPE Study Collaborative Group (2012) Unmet adolescent and young adult cancer survivors information and service needs: a population-based cancer registry study. Journal of Cancer Survival 6(3):239–250CrossRefGoogle Scholar
- 18.Zebrack BJ, Corbett V, Embry L, Aguila V, Meeske KA, Hayes-Lattin B, Block R, Zeman DT, Cole S (2014) Psychological distress and unsatisfied needed for psychosocial support in adolescent and young adult cancer patients during the first year following diagnosis. Psycho-Oncology. doi: 10.1002/pon.3533 PubMedCentralGoogle Scholar
- 26.Weathers FW, Litz BT, Herman DS, Huska JA, Keane TM (1993) The PTSD Checklist (PCL): reliability, validity, and diagnostic utility. Annual Convention of the International Society for Traumatic Stress Studies; International Society for Traumatic Stress Studies San Antonio.Google Scholar
- 29.McCarthy MC, McNeil R, Drew S, Dunt D, Kosola S, Orme L, Sawyer SM (in press). Psychological distress and posttraumatic stress symptoms in adolescents and young adults with cancer and their parents. Journal of Adolescent and Young Adult Oncology.Google Scholar
- 31.Gupta AA, Edelstein K, Albert-Green A, D’Agostino N (2013) Assessing information and service needs of young adults with cancer at a single institution: the importance of information on cancer diagnosis, fertility preservation, diet, and exercise. Support Care Cancer 21(9):2477–2484CrossRefPubMedGoogle Scholar