Childhood cancer and Proton Beam Therapy

• Research type

  Research Study

• Full title

  Childhood cancer and Proton Beam Therapy: an investigation into clinician, parent and patient perceptions and experiences

• IRAS ID

  178724

• Contact name

  Nadia Haerizadeh-Yazdi

• Contact email

  n.haerizadeh-yazdi@surrey.ac.uk

• Duration of Study in the UK

  0 years, 11 months, 30 days

• Research summary

  Proton Beam Therapy (PBT) is a form of therapy, which delivers radiation to the targeted site with a reduced risk of toxicity. This property is especially important when treating children, since it reduces damage to healthy and developing tissues, consequently reducing the risk of secondary and long­term effects. High­energy PBT is unavailable in the UK although facilities are planned to open in 2018. Currently the NHS will pay for selected patients to receive PBT at hospitals outside the UK based on National Clinical Reference Group for radiotherapy’s approval. The list of eligible users is restricted to an approved list of diagnoses and dependent on criteria such as the patient’s age, their ability to travel, and on them being accepted by the treatment centre.
 The current referral system and limitations on access to PBT may lead to challenges for clinicians in the UK, both in terms of the clinical management of patients and interactions with patients and their families when referral is not considered appropriate. The Aysha King case is a high profile example of the latter and media coverage may have further complicated communications around an already sensitive topic. Comparatively little is known about the illness experiences of young patients with the types of Central Nervous System (CNS) tumours for which PBT is deemed suitable and research examining the experiences of paediatric patients and their families referred for PBT is scarce.
  This qualitative inquiry seeks to examine the experiences and perspectives of medical professionals, paediatric patients and their parent(s)/carer(s). Whilst adding to existing sociological and health literature on families’ experiences of paediatric CNS cancers, the study will provide broader insights into the impact of having to travel for treatment on young patients and their families. Research findings will be of interest to clinical staff, policy makers and charities.

• REC name

  South West - Cornwall & Plymouth Research Ethics Committee

• REC reference

  15/SW/0235

• Date of REC Opinion

  28 Aug 2015

• REC opinion

  Unfavourable Opinion