Radiation continues to be an important treatment modality for pediatric solid tumors. Over the years, an increasing number of patients have been referred out of Canada to the United States for proton beam therapy (PBT) due to its potential advantages, such as precise dose control leading to reduced long-term toxicities. However, despite the advantages, an out-of-country referral involves a special application to the relevant provincial Ministries of Health, and many incidentals and out-of-pocket expenses for patients and their families, including airfare, transportation, accommodations and meals.

At present, Canada is actively participating in a prospective PBT registry to capture clinical data of such patients. However, the psychosocial and financial impact on families is still challenging to assess through clinical data alone. While participation in the PBT registry study is pivotal, it is equally important to concurrently collect and evaluate patient-reported outcomes of PBT, its economic and financial impact, and patient experience on referrals and other processes through focused surveys with families. In addition, sharing a significant part of treatment with an out-of-country provider can lead to unexpected complexities in long-term clinical follow up of these patients. Therefore, it is beneficial to capture health care provider perspectives as well until patients can be treated in Canada.

This work will provide a comprehensive understanding of the multi-dimensional impact of PBT on pediatric patients and their families, including physical, psychosocial, and financial aspects. By identifying gaps and challenges in current practices, the study can inform policy changes, streamline referral processes, and optimize patient care pathways.

Furthermore, the insights gained will support advocacy efforts to establish PBT facilities within Canada, thereby reducing the burden on families and ensuring equitable access to advanced treatment options. Ultimately, this study holds the promise of improving the overall care experience and long-term outcomes for children with cancer in Canada.

For more information, please contact Tricia Schneider.