ESTRO 2023 Young Report on Interdisciplinary Track

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The Importance of Patient Perspectives

It was a great privilege for me to join Elizabeth Forde in co-chairing the proffered papers and patient perspectives session at this year’s ESTRO. I, like many others, felt the clear shift in research this year becoming more focused on patient perspectives and outcomes, rather than overall survival. Not only did the results presented within this session capture topics on quality of life, but we also got to hear about barriers to inclusion and financial toxicities of treatments such as proton beam therapy (PBT), as well as what patients think about the future AI developments that we are all so fascinated by.

Anne Kristensen from Denmark kicked off the session by presenting her work on barriers to inclusion in head and neck cancer patients undergoing PBT trials. As in the UK, patients receiving PBT in Denmark often must travel a significant distance away from home to receive their treatment. As Anne discovered, this resulted in many patients turning down the treatment altogether. The patient interviews she carried out highlighted themes of patients being overloaded with information and significantly emotionally distressed, so the benefits of taking part in a PBT trial were outweighed by the thought of having to leave the safety and comfort of home and family. She highlighted a key take-home message – that these patients not only need knowledge for informed decision-making, but also decisional support.

Barbara Bachtiary followed on from this session with her work investigating the financial toxicity of proton beam therapy for Swiss cancer patients. Although the treatment itself is usually covered by medical insurance, the additional costs of transport, accommodation, external meals, childcare, etc. are not routinely covered and thus patients must often support these additional costs themselves, potentially on top of not being able to work. This means patients will often be forced to use their savings, take out loans, or even sell their property. As might be expected, low-income households who live far away from the PBT facilities are most affected by such financial toxicity.

To finish off the session, Hajar Hassanejadasl took to the podium to present her work on patient attitudes toward AI-based decision aids. She interviewed previous breast cancer patients from the Netherlands and concluded that patients are, in fact, willing to use AI decision aids in practice but are wary of using them in high-impact scenarios such as when making decisions around survival and risk of recurrence. She discussed that this AI-based software would not be used to replace meaningful conversations and support from physicians but rather act as a source of information to help facilitate patient-physician conversation.

Hajar’s, Barbara’s and Anne’s work all highlight just why patient perspectives are such a vital piece of the research and development puzzle as we move into an era of rapidly modernizing technology. We must remember that there is a person at the centre of every project.

Danielle Fairweather
Research Fellow and RTT
University College Hospital
London, UK