What do parents think about Child Proton Beam Therapy?

By Nadia Haerizadeh-Yazdi, former Postgraduate Researcher

Proton Beam Therapy (PBT) is an advanced mode of radiotherapy, compared to conventional radiotherapy, and has been hailed as a milestone in cancer treatment. Proton therapy offers an equivalent chance of cure to conventional photon therapy, but the high precision targeting nature of the technology is thought to reduce risks of toxicity and damage to healthy tissues (1, 2).

Proton therapy was relatively unknown and unheard of until September 2014, when the case of Ashya King brought PBT to the foreground of public attention. The case was the focus of a media frenzy, public discussion and political debate and can be summarised as follows: following the completion of surgery on Ashya’s brain tumour, communication broke down and conflict arose between the boy’s parents and medical team. The Kings did not agree with the follow-up treatment plan proposed by the doctors, i.e. conventional radiation therapy, due to the fact that they regarded this approach as “trial-and-error” and did not want their son to be “pelted with radiation” (3). Concerned about the serious long-term side effects of treatment, the Kings searched for an alternative and less debilitating treatment plan and came across PBT. Based on their own view of what is better treatment for their child, the Kings took their son out of the care of a Southampton hospital and travelled abroad (since treatment was not available in the UK at the time) in pursuit of the alternative treatment. What followed was an international police hunt for Ashya and his parents, since the medical team feared for the child’s safety and wellbeing. Following an initial public outcry towards the parents, whom were thought to have behaved irresponsibly by placing Ashya’s life in danger, the revelation that the Kings were in search of a ‘better’ mode of treatment, denied by the NHS, resulted in an uproar veered towards the medical team and the NHS. Shortly after this incident, the case of Freya Bevan also received attention when news of her parents’ funding bid for PBT became widespread. The NHS proton decision panel had refused funding for Freya and so together with their local community, the Bevans raised over £110,000 needed for their daughter to received proton treatment abroad.

As part of an ESRC funded PhD, supervised by Robert Meadows and Christine Hine, I interviewed 21 families whose child had undergone PBT in NHS supported US proton centres.  Whilst the majority of the children’s treatment was funded by the NHS, some families had raised funds privately and put their child forward for proton treatment, against the advice of their primary NHS based doctor. The research set out to examine these parents’ experiences and to explore the way parents of children treated with PBT view both the treatment and the sources of information surrounding the treatment. Some of these findings have been reported in an upcoming paper: Child Proton Beam Therapy: A qualitative study of parental views on treatment and information sources. Whilst reporting on the various views of proton treatment, it is also revealed that parents are faced with the challenge of a ‘fragmented expertise’ which comes with the ‘rare’ nature of the tumours, the novelty of the treatment as well as the remote location of clinical specialists in the USA. It is important to be mindful of these issues even when the NHS centres become fully operational, given that referrals from the north of England, Scotland, Northern Ireland and north Wales will be sent to The Christie Centre in Manchester for example and therefore the challenges of fragmented expertise may still apply. It is hoped that this article will prove useful for practitioners dealing with parents and care givers of children undergoing proton therapy, and is especially valuable and timely for practitioners based in the newly installed proton centres in the UK. The two high energy proton centres are expected to become fully operational in the UK by the end of 2020.  Understanding parents’ experiences and perspectives can help avoid undue anxiety and lead to service improvements and overall satisfaction.

  1. Yock, T. I., Yeap, B. Y., Ebb, D. H., Weyman, E., Eaton, B. R., Sherry, N. A., et al (2016). Long-term toxic effects of proton radiotherapy for paediatric medulloblastoma: a phase 2 single-arm study. Lancet Oncol. 17: 287–98

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