Travelling overseas for proton beam therapy: A retrospective interview study.

Introduction: Travelling for cancer treatment comes with unique challenges, particularly for a young patient and his or her family. The aims of this study were to (1) gain an understanding of the experiences of families and patients who travelled overseas (OS) from Australia for proton beam therapy (PBT) and (2) identify the supportive care needs patients and their families require when living away from home, while having PBT.

Methods: This was a retrospective, qualitative study using semi-structured interviews, conducted with participants aged under 25 years and their families who travelled OS for PBT between 2017 and 2020. Data were analysed using Microsoft Excel Software, where key themes were identified and coded based on their responses. A total of 17 participants were included in interviews from seven Australian families who travelled to America or Europe for PBT.

Results: The majority of participants reported a lack of coordination with travel and treatment arrangements prior to arrival OS. Families who stayed in hotel accommodation while OS reported greater feelings of isolation compared with those who stayed in share house-style accommodation. The acuity of cancer diagnosis played a significant part in patient experience, with those patients requiring the greatest amount of supportive care and availability of service provision at stand-alone centres reporting a lack of appropriate care provision.

Conclusions: This study has identified services, accommodation provisions and care coordination requirements that are largely missing from the travel and treatment experience in patients travelling OS for PBT. Future use of consumer-led working groups or committees in creating models of care for families travelling for PBT treatment could be advantageous, with many families willing to share their experiences and provide support to others who are travelling for PBT.