What Matters Most: The Top 10 Child and Adolescent Cancer Research Priorities in Australia

ABSTRACT 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.

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Publication Details

Journal
Health Expectations
Published
2026-05-16
DOI
https://doi.org/10.1111/hex.70689
Primary Topic
Childhood Cancer Survivors' Quality of Life
Type
article
Field-Weighted Citation Impact
0.00
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article

What Matters Most: The Top 10 Child and Adolescent Cancer Research Priorities in Australia

Sheila K. Patel, Jason D. Pole, Joanne Cummings, Ursula M Sansom-Daly et al.
Health Expectations
Childhood Cancer Survivors' Quality of Life
article

What Matters Most: The Top 10 Child and Adolescent Cancer Research Priorities in Australia

Sheila K. Patel, Jason D. Pole, Joanne Cummings, Ursula M Sansom-Daly, Maria C. McCarthy, Clarissa Schilstra, Jordana McLoone, Alison Bowers, Gayani De Silva, Sabina Oppelaar, Eden G. Robertson, Natalie Bradford
article en

Abstract

ABSTRACT 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.

Health ExpectationsVol. 29(3)
Queensland Health (AU), Royal Children's Hospital (AU), Queensland University of Technology (AU), The University of Queensland (AU), The University of Melbourne (AU), Cancer Council Queensland (AU), UNSW Sydney (AU), Cancer Australia (AU), Prince of Wales Hospital (AU), Parenting Research Centre (AU), Sydney Children's Hospital (AU), Murdoch Children's Research Institute (AU)
Partnerships for the goals
Openalex Percentile: Top 4%
Childhood Cancer Survivors' Quality of Life
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