Precision pediatric oncology offers transformative potential for children, adolescents, and young adults (CAYA) with hard-to-cure cancers by tailoring treatments based on individual tumor biology. However, decision making in this complex landscape remains poorly understood. Given that treatment options can be rapidly evolving, and evidence is often limited in pediatric contexts, the recommendations clinicians received from Molecular Tumour Boards (MTB) based on tumour profiling can be complex, while patients and families may struggle to interpret and weigh these recommendations.

Additionally, shared decision making between clinicians and patients can lead to improved outcomes, preferences between patients and clinicians may diverge, leading to inconsistencies in treatment implementation. As a result, opportunities to improve outcomes may be missed due to communication gaps, unmet informational needs, or system-level barriers. There is currently little evidence describing which factors matter most to pediatric oncologists, patients, and caregivers when making decisions in precision oncology, limiting the ability to design truly patient-centered programs and policies.

This national project aims to identify and quantify the key factors influencing decision making in precision pediatric oncology using a Discrete Choice Experiment – a validated method that reveals stakeholder preferences by presenting hypothetical scenarios and asking participants to make trade-off decisions. Through this approach, we will capture the values and priorities of both pediatric oncologists, CAYA patients, and caregivers, particularly in the context of interpreting and acting on recommendations.

By understanding which attributes (e.g., strength of evidence, expected side effects, likelihood of benefit, patient values) most influence treatment decisions, the project will support the development of more effective shared decision-making frameworks. It will also identify barriers to implementation of MTB recommendations, such as systemic issues, communication gaps, or mismatched expectations between patients and providers.

Aligned with ACCESS’ mission this project seeks to ensure that all CAYA cancer patients – regardless of background or geography – have access to precision oncology decision-making processes that reflect their needs and values. Findings will be directly applicable to the evolution of precision oncology programs in Canada, including PRecision Oncology For Young peopLE (PROFYLE), and shared with broader stakeholder networks, including Persons With Lived Experience (PWLE), to guide precision oncology policy and practice improvements nationwide.

While the study is focused in Canada, the team are also collaborating with researchers in Australia, to facilitate understanding of variations in different jurisdictions and to generate knowledge to benefit the international CAYA cancer community.

For more information, please contact ACCESS Secretariat.