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

Year: 2016

Session type: Poster / e-Poster / Silent Theatre session

Theme: Information, patients and the public

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.