Proton therapy websites: information anarchy creates confusion.

Abstract

Comments Correspondence: John Withington, Department of Urology, Guy’s Hospital, Great Maze Pond, London SE1 9RT, UK. e-mail: john.withington@gstt.nhs.uk Abbreviations: HES, Hospital Episode Statistics; PCNL, percutaneous nephrolithotomy; SCTS, Society of Cardiothoracic Surgeons. Proton Therapy Websites: Information Anarchy Creates Confusion Marnique Basto, Matthew R. Cooperberg* and Declan G. Murphy Division of Cancer Surgery, University of Melbourne, Peter MacCallum Cancer Centre, Melbourne, Victoria, Australia; and *Department of Urology, University of California San Francisco Helen Diller Family Comprehensive Cancer Center, San Francisco, CA, USA Introduction Proton beam therapy (PBT) is a form of external beam radiotherapy (RT) that has been in therapeutic use for almost half a century. The advantage over the more commonly used photon-based RT lies in its ability to deliver maximum tumour doses at the end of the beam range with minimal exit dose, thus reducing dose to adjacent healthy tissue [1]. Evidence is emerging for the superiority of PBT for certain paediatric cancers and those of the eye, spine and skull [2], but no evidence currently exists showing any clinical superiority for PBT over brachytherapy or intensity modulated RT (IMRT) for the treatment of localised prostate cancer. In response to recent public concern the American Society for Radiation Oncology (ASTRO) released recommendations against the use of PBT ‘outside of a prospective clinical trial or registry’, stating ‘there is no clear evidence that proton beam therapy offers any clinical advantage’ [3]. The other consideration with respect to PBT clinical development is the extraordinary outlay for the facilities, each of which costs $150–200 million (American dollars) to build. Despite this dearth of evidence and expenditure, many internet-based resources aimed at both patients and professionals claim the superiority of PBT over photon-based RT and other interventions. In the USA, the number of PBT facilities expanded from three to 13 between 2001 and 2013. The number of Medicare beneficiaries receiving PBT nearly doubled between 2006 and 2009 due to a 68% increase in use for ‘conditions of possible benefit’ mostly accounted for by prostate cancer [4]. Given the relatively rare incidence of paediatric, eye, skull and spinal cancers, PBT centres have come under scrutiny for possibly seeking a more ‘common cancer’ as a means of recouping the massive capital and running costs. USA Medicare reimbursements for PBT peaked at $28 million in 2007, of which prostate cancer treatment accounted for 83.3% of this ($23.3 million), a mean total cost of $34 954 per patient [4]. It is noteworthy that due to lack of evidence of superiority, a few major insurance companies in California recently announced they will no longer cover the costs of PBT for prostate cancer [5]. Patients considering prostate cancer treatment increasingly rely on web-based resources, in 2010 the number of internet users in the USA who searched online for health information increased from 25% to 80% over the prior decade [6]. Additionally, a recent study of men aged <50 years with Gleason 6 prostate cancer, revealed the internet was the second most frequent information source, after their doctor, in dictating treatment decision-making [7]. However, the anarchic nature of the internet means consumers could be making healthcare decisions based on low quality or inaccurate claims. Shah et al. [6] analysed 37 websites with information pertaining to PBT and found 38% had commercial affiliations with shortcomings in quality and accuracy of consumer-oriented health information. This potential for misleading web-based material has been previously highlighted for robotic surgery where sites have purportedly overestimated benefits, neglected risks and were strongly influenced by the manufacturer [8]. We thus sought to evaluate PBT websites with respect to characteristics of website information and claims made. We identified websites using snowball-purposive sampling to emulate a consumer searching the internet. This methodology has been used in previous studies [6] and captures additional © 2014 The Authors BJU International © 2014 BJU International