POSITIVE IMPACT OF PATIENT INVOLVEMENT IN ESTABLISHING AND RUNNING AN INTERNATIONAL RADIOTHERAPY STUDY: THE REQUITE PROJECT


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Hilary Stobart1,Erik Briers2,Liz Isler2,Tim Ward2,David Azria3,Anthony Brookes4,Jenny Chang-Claude5,Susan Davidson6,Dirk De Ruysscher7,Alison Dunning8,Philippe Lambin9,Barry Rosenstein10,Christopher Talbot4,Hubert Thierens11,Riccardo Valdagni12,Ana Vega13,Martin Yuille14,Catharine West14
1REQUITE Patient Advisory Group & Ethical Review Group,2Patient Advisory Group & Ethical Review Group,3University of Montpellier,4University of Leicester,5German Cancer Research Centre,6The Christie NHS Foundation Trust,7Maastricht University Medical Center, Radiation Oncology (Maastro Clinic), GROW, University Hospitals Leuven/ KU Leuven,8University of Cambridge,9Maastricht University Medical Center, Radiation Oncology (Maastro Clinic), GROW,10Ichan School of Medicine at Mount Sinai,11Universiteit Gent,12Fondazione IRCCS Istituto Nazionale dei Tumori,13Fundación Pública Galega Medicina Xenómica,14University of Manchester

Abstract

Background

The number of cancer survivors is increasing with ~50% receiving radiotherapy as part of their care.  Around 3-5% will suffer severe long-term side-effects due to the unavoidable irradiation of healthy tissue surrounding a tumour and many more will experience moderate side-effects with a marked effect on quality-of-life. Prediction of patients at risk of side-effects would enable individualisation of treatment and improve quality-of-life in cancer survivors. The EU funded REQUITE project aims to validate predictive models and biomarkers of radiotherapy toxicity. Specific aims are to: perform a prospective, longitudinal, multi-centre, cohort study collecting standardised epidemiology, radiotherapy, side-effect and quality-of-life data in 5,300 patients with breast, prostate or lung cancer recruiting in eight countries across Europe and in the USA; create a centralised biobank of DNA; validate published biomarkers of radiosensitivity; validate statistical models in existing cohorts and then in the REQUITE cohorts incorporating biomarker data; and design interventional trials to reduce long-term side-effects.

Method

REQUITE is supported by four international patient representatives who are actively engaged in cancer research and patient communities. Representatives for the cancers studied were approached during the development of the project and involved in writing the grant proposal.  Following success in obtaining funding, they had a key role in producing study documentation: patients reported outcome questionnaires, the protocol, patient information sheets and consent forms.  During bimonthly phone conferences and annual face-to-face consortium meetings, patient representatives review and advise on ongoing activities including website accessibility, additional sub-studies and potential future interventional trial designs.

Results

Patient advocate engagement helped secure funding, and was beneficial from the outset in establishing an observational study. Involvement continues through dissemination and by supporting and challenging scientists and clinicians in the REQUITE consortium.

Conclusion

Active engagement by patient advocates has a positive impact in supporting international research.