ID #418 “From Proton Referral to Follow-Up”: A Qualitative Exploration of Health Care Provider Perspectives on Proton Radiation Therapy for Canadian Paediatric Patients.
Megan Sim, Sarah Hooseman, Asli Ozer, A Howard, Samantha Pollard, Sharon Bulger, Ralph Ermoian, Rebecca Ronsley, Meera Rayar, Andrea Lo, Robert Nordal, Samir Patel, Derek Tsang, Sylvia ChengAbstract
Background
Proton beam therapy (PBT) is an important treatment modality for paediatric oncology patients, limiting radiation exposure to surrounding normal tissues and critical structures; however, access for Canadian patients involves referral to the United States. Coordinating out-of-country PBT involves complex logistical planning and challenges across the care pathway. The scope of challenges faced by Canadian health care providers (HCPs) is poorly understood. This qualitative study explores HCP experiences in delivering and coordinating care for PBT.
Methods
We conducted semi-structured interviews with Canadian referring HCPs and U.S. proton therapy centre treating HCPs to explore experiences accessing proton radiation for Canadian paediatric oncology patients. Interviews were audio-recorded, transcribed, and analysed using thematic analysis. Parent codes were deductively derived from interview guide domains, with child codes developed using combined deductive and inductive approaches to capture experiences of referral, cross-border care, and navigation of existing healthcare systems.
Results
Fifteen HCPs from Canadian and U.S centres were interviewed, including nurses (n = 2), nurse practitioner (n = 1), social workers (n = 3), child life therapist (n = 1), radiation oncologists (n = 4), and paediatric oncologists (n = 4). Four interrelated themes emerged: referral processes, shared care and treatment process, system-level factors, and future recommendations. Participants described complex, time-sensitive referrals shaped by clinical urgency, family preferences, and administrative burden. Shared care was challenged by variable communication, information exchange and coordination of care, while system-level barriers included funding and policy constraints, lack of domestic proton capacity, and immigration status. HCP experiences varied due to provincial differences in approvals and resources, creating inequities in support resources.
Conclusion
Cross-border PBT delivery is influenced by interacting clinical, administrative, and system-level factors, with key roles played by diverse HCPs across settings. These findings highlight the complexity of care coordination and underscore the need to streamline pathways, clarify roles, and better support Canadian children and families across referral, treatment, and follow-up.