POSITIVE IMPACT OF PATIENT INVOLVEMENT IN ESTABLISHING AND RUNNING AN INTERNATIONAL RADIOTHERAPY STUDY: THE REQUITE PROJECT
Session type: Poster / e-Poster / Silent Theatre session
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.
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.
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.
Active engagement by patient advocates has a positive impact in supporting international research.