What Matters Most

The Top 10 Child and Adolescent Cancer Research Priorities in Australia

Bibliographic Data

ID19506541
AuthorsGayani De Silva (0000-0001-9176-9306, Queensland University of Technology, corresponding author), Eden G Robertson (0000-0001-9395-7896, Sydney Children's Hospital), Alison Bowers (0000-0002-9870-0931, Queensland University of Technology), Clarissa Schilstra (Cancer Australia), Sheila K Patel (0000-0002-0626-1899, The University of Melbourne), Maria Mccarthy (0000-0001-6543-3921, Children's Cancer Centre, Royal Children's Hospital Parkville Victoria Australia), Maria C McCarthy (Royal Children's Hospital), Jordana Mcloone (0000-0002-2604-9975, Sydney Children's Hospital), Jason D Pole (0000-0002-0413-5434, Queensland Health), Ursula M Sansom‐Daly (0000-0003-4200-8900, Behavioural Sciences Unit, School of Clinical Medicine, UNSW Medicine & Health, Discipline of Paediatrics and Child Health, Randwick Clinical Campus, UNSW Sydney Randwick New South Wales Australia), Ursula M Sansom-Daly (Prince of Wales Hospital), Sabina Oppelaar (Queensland University of Technology), Joanne Cummings (0000-0001-7720-9839, UNSW Sydney), Natalie Bradford (0000-0003-1602-4544, Queensland University of Technology)
Year2026
Volume29
Issue3
Pagese70689-e70689
Publication date2026-06-01
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenueHealth Expectations (JOURNAL)
Journal identifiersISSN: 1369-6513 • E-ISSN: 1369-7625
PublisherWiley (PUBLISHER • GB)
DOI10.1111/hex.70689
PMID42142307
OpenAlexW7161390156
LanguageEN
Citations received1
References cited36

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

Adolescent health · Alliance · General partnership · Health care · MEDLINE · Pediatric cancer · Psychosocial · Service (business) · Acute Lymphoblastic Leukemia research · Childhood Cancer Survivors' Quality of Life · Family Support in Illness

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