ID #573 Proton Beam Therapy for Canadian Children with Cancer: A Survey of Caregiver Experiences
Emily Jewels, Sarah Hooseman, Megan Sim, Samir Patel, Robert Nordal, Derek Tsang, Sharon Bulger, Chantel Cacciotti, Anne-Marie Charpentier, Paul D’ Alessandro, Craig Erker, Magimairajan Issai Vanan, Liana Nobre, Sébastien Perreault, Mary-Pat Schlosser, Sonia Skamene, Andrea Lo, Sylvia ChengAbstract
Background
Radiation therapy is a cornerstone of curative-intent treatment for pediatric solid tumours, including intracranial tumours. While conventional photon therapy is available in Canada, access to proton therapy requires out-of-country referral, provincial approval, and is frequently accompanied by incidental costs to families including, airfare, accommodations, and meals—creating financial burden and differential access across families. Canadian data on proton therapy utilization is limited. Socioeconomic status influences access in the United States of America, but its impact in Canada remains unclear despite process for out-of-country funding. This study addresses these gaps.
Objectives
To describe patient facilitators and barriers to proton beam therapy (PBT) and assess economic impact on patients.
Methods
We administered a 21-item electronic survey to Canadian caregivers of children who received PBT. The survey explored caregiver perspectives on the burdens, concerns, and stressors arising from PBT processes and the impacts on their child and family. Descriptive statistics summarize survey responses with categorical variables. Open-ended survey responses were analysed using thematic analysis.
Results
Forty-three caregivers responded. Most families required multiple financial resources during treatment (76%) incurred substantial out-of-pocket costs—with 70% reporting expenses exceeding $5,000–and 58% reported difficulty taking time off work. Despite representation across income levels, economic and employment disruptions were common. Caregivers reported significant stress related to out-of-country PBT, including financial strain (93%), travel burden (91%), and limited psychosocial support (81%). Regret regarding treatment decision-making was uncommon.
Conclusion
Access to PBT for Canadian children is associated with substantial financial, employment, and psychosocial burden for families, despite current public funding health care mechanisms. These findings underscore the need for improved supports and resources to reduce inequities and mitigate caregiver stress related to out-of-country treatment.