Travelling overseas for proton beam therapy: A retrospective interview study

Abstract

IntroductionTravelling 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.MethodsThis 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.ResultsThe 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.ConclusionsThis 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.

Is proton beam therapy always better than photon irradiation? Lessons from two cases

“…Critically there is no proton facility in Australia, and travelling overseas for PBT can be a difficult and stressful process. 24 Even with government funding, some patients and families decide not to go overseas. Developing proton facilities locally will help improve access to PBT.…”

“…Multiple factors are also considered. Critically there is no proton facility in Australia, and travelling overseas for PBT can be a difficult and stressful process 24 . Even with government funding, some patients and families decide not to go overseas.…”

Proton therapy in Asia Pacific: current resources, international disparities and steps forward

“…In Singapore for instance, the Ministry of Health lists approved indications for PBT and their corresponding government insurance claim limits, guaranteeing coverage for eligible patients while setting practice parameters for prescribing physicians 14 . In Australia where there is no PBT facility, patients can apply to the federal government's Medical Treatment Overseas Programme which provides funding and logistical support for PBT overseas 15 . Efforts to democratise PBT in Asia Pacific have to take into account its affordability to the general population by minimising out‐of‐pocket expenses as much as possible and avoiding risks of financial catastrophe for vulnerable patients and their families.…”

Transforming cancer care in Australia: The dawn of particle therapy

“…Skelton et al. delve into the challenges encountered by families travelling overseas for proton therapy, underscoring the necessity for enhanced support and care coordination 10 . Mathew et al.…”