Most parents of children with cancer don’t really understand what precision medicine is, and their expectations for a direct benefit for their child can be high – that’s tricky, as this approach to medicine is new, and in most cases there’s no breakthrough drug at the end of the road yet. Managing families’ expectations can therefore be challenging for the doctors who care for them.
For scientists, precision medicine is also a completely new way of working - it’s often the first time they’ve conducted their work knowing that a sick child is waiting for their results.
This means that precision medicine comes with a unique set of challenges – and from a psycho-social point of view, establishing the evidence now to understand the experiences of families, doctors and scientists will have long-term benefits for everyone involved in precision medicine trials – on our end, we will use the evidence to develop educational resources for families and doctors and increase public awareness of the aims and limitations of precision medicine.
In the study we interviewed 15 parents, 17 doctors and 16 scientists. For over half (66%) of the parents we interviewed, their child died from their cancer despite being part of the trial. Still, parents did not generally regret enrolling their child in the precision medicine trial. Hope that their child would benefit generally drove parents' initial decision to participate, although they knew they were advised that the trial was unlikely to yield clinically-useful results for their child. Doctors and scientists embraced the new technologies and collaborations but also reported challenges around managing families’ expectations and finding the right time to offer these tests.
This paper was led by Dr Janine Vetsch and can be accessed here at JCO Precision Oncology: https://ascopubs.org/doi/abs/10.1200/PO.19.00235