Top 10 research gaps in child and adolescent cancer care identified in nationwide study 

• Study with 730 participants - patients, families and health professionalson identifying and prioritising research needs 

• Top research priorities span safer, personalised treatment, survivorship, and psychosocial wellbeing 

• Identifying better ways for the Equitable delivery of cancer care is a high priority for Indigenous, regional, rural and remote children 

First author Dr Gayani De Silva, from QUT’s School of Nursing, conducted a James Lind Alliance Priority Setting Partnership (PSP) bringing together children and adolescents diagnosed with cancer before age 19, their families, caregivers, and health professionals from across Australia to identify the top 10 research priorities. 

“Patient and public involvement is at the core of a Priority Setting Partnership and central to our study from the beginning,” Dr De Silva said. 

“A research agenda targeting evidence gaps must be grounded in the lived experiences of patients, families, and health professionals to enable efficient resource allocation, meaningful outcomes, and support economic sustainability.  

“This ensures that future research will better address real-world challenges faced during and after treatment. 

“The PSP involved two online surveys and an online workshop which involved 730 participants with diverse clinical and personal experience and across age groups.” 

Dr De Silva said the research gaps fell into four themes: treatment and side effects management; long term effects and survivorship; psychosocial well-being & support; service delivery.  

“Despite rising national childhood cancer cure rates, the PSP’s number one priority was more research on safer, effective therapies to prevent relapse and treatment resistance for child and adolescent cancer patients,” she said.

“Alongside that, we need research on how to minimise the trauma associated with cancer treatment and better integrating that into clinical care pathways. 

“We must also prioritise research on factors that contribute to the risk of relapse and treatment resistance to see if that can help personalise treatment to avoid these possibilities. 

“Barriers we must overcome to develop better treatments include slow drug development due to disease diversity, disease rarity, limited child-specific evidence, and constraints on large-scale trials. 

“Yet, culturally safe, context-specific, and Indigenousled approaches remain under-researched, and service delivery are often fragmented across different settings. 

"Achieving equity requires tailored, accessible, and responsive services that address the diverse needs of children and families across Australia.” 

Dr De Silva said that as survival rates had improved, long-term effects had become increasingly prominent, with survivorship research emerging as a key priority area (ranked second and third). 

"After effects often emerge years after treatment and negatively affect quality of life,” she said.