Information needs of adolescent and young adult cancer patients and their parent-carers
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This study aimed to explore health-related information needs of adolescent and young adults (AYAs) and their parent-carers and to examine demographic and clinical variables associated with unmet information needs, including patient activation.
In a national cross-sectional study, 196 Australian AYAs diagnosed with cancer between 15 and 25 years and within 24 months of diagnosis and 204 parent-carers reported on total and unmet needs for cancer and health-related information. Fifty-one percent of AYAs were male, 81% had completed treatment and 86% were treated in adult hospitals.
AYAs and parents reported high levels of total need for information. The mean number of unmet needs was 5.63 and 6.82 for AYAs and parents, respectively. AYAs reported the highest unmet needs in relation to their cancer (e.g. late effects and cancer recurrence, and having children in the future). The highest unmet parent information needs were related to medical information about their child as well as information on financial issues for their children and themselves. Unmet information need was associated with psychological distress (posttraumatic stress symptoms) for AYAs and parents. Patient activation was negatively associated with unmet information needs for AYAs. Demographic and treatment variables were not significantly associated with information needs.
These findings indicate the importance of information needs for AYAs and their carers. The association between patient activation and information needs suggests that promoting young people’s engagement with healthcare is a key opportunity within AYA care. Parent information needs and associated emotional distress additionally highlight the importance of family-centered care.
KeywordsCancer Adolescent and young adult Information Unmet needs Parents Patient activation
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 Beyondblue and Canteen through the Priority-driven Collaborative Cancer Research Scheme. Additional funding was gratefully received from Redkite, The Royal Children’s Hospital Foundation and ONTrac Adolescent & Young Adult Cancer Service, Peter MacCallum Cancer Centre and the Victorian Government’s Operational Infrastructure Support Program. Dr. McCarthy is funded via a Murdoch Children’s Research Institute Career Development Award.
Compliance with ethical standards
Conflict of interest
The authors declare that they have no conflicts of interest.
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