ArticleHealth expectations : an international journal of public participation in health care and health policy2026
What Matters Most: The Top 10 Child and Adolescent Cancer Research Priorities in Australia.
Article in Health expectations : an international journal of public participation in health care and health policy, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
backgroundChildren and adolescents diagnosed with cancer and their families have unique medical and psychosocial needs. Addressing these requires research centred on issues most relevant to them. Currently, Australia lacks a research agenda grounded in lived experience and clinical expertise to guide inquiry into child and adolescent cancer.
objectiveTo identify the top 10 research priorities for child and adolescent cancer in Australia.
methodsWe conducted a James Lind Alliance Priority Setting Partnership involving two national online surveys and an online workshop. Individuals diagnosed with cancer before age 19, caregivers, and health professionals providing care were involved in the process.
resultsIn Survey 1, 229 respondents (41 patients/survivors, 118 caregivers, 70 professionals) submitted 602 in-scope research questions. These were grouped and refined into 49 summary questions and verified as unanswered through literature reviews. In Survey 2, 474 respondents (32 patients/survivors, 289 caregivers, 139 professionals) selected and ranked the questions most important to them, narrowing the list. The top-ranked 19 questions were then discussed in a workshop with 27 participants (7 survivors, 9 caregivers, 11 professionals) to reach consensus on the final top 10. Priorities span treatment, survivorship, psychosocial support, and service delivery.
conclusionsThese priorities provide the first step toward establishing a child and adolescent cancer research agenda in Australia that reflects both lived experience and clinical expertise. They call for future research into safe and personalised care across the trajectory, delivered with equality using culturally safe approaches. Collaboratively advancing these priorities will accelerate translation of evidence into meaningful outcomes.
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