Health expectations : an international journal of public participation in health care and health policy · 2026
What Matters Most: The Top 10 Child and Adolescent Cancer Research Priorities in Australia.
СтатьяПоддержка исследования: вне правительства СШАНазвание и аннотация: Перевод в очереди
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De Silva Gayani, Robertson Eden G, Bowers Alison, Schilstra Clarissa, Patel Sheila K, McCarthy Maria C, McLoone Jordana, Pole Jason D, Sansom-Daly Ursula M, Oppelaar Sabina, Cummings Joanne, Bradford Natalie
Аннотация
BACKGROUND: Children 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.
OBJECTIVE: To identify the top 10 research priorities for child and adolescent cancer in Australia.
METHODS: We 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.
RESULTS: In 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.
CONCLUSIONS: These 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.
OBJECTIVE: To identify the top 10 research priorities for child and adolescent cancer in Australia.
METHODS: We 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.
RESULTS: In 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.
CONCLUSIONS: These 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.