Recruitment for a survey on the unmet needs of patients living with metastatic colorectal cancer (mCRC): Lessons from a European study
Authors: Z. Maravic, J. Stanisic Trenevski, J. Bokros, A. Ruiz Casado, C. González de Pedro, M. Méndez Otero, J. Borràs, T. Ferro, O. Rial
Journal: Annals of Oncology (2018)

Introduction: Colorectal cancer is still a taboo for many patients and there is little information about the patient's experience in general practice. Much of what is known about their quality-of-life comes from clinical trials – that are not representative of everyday patient experience. To fill this gap, EuropaColon, a European CRC patient organisation, planned and carried out a survey on the Unmet Needs of Patients Living with Metastatic Colorectal Cancer (mCRC). The aim of the survey was to better understand the challenges and needs of those living with mCRC as well as to understand their quality-of-life. Methods: The English survey was translated into 11 languages (German, Greek, Hungarian, Italian, Dutch, Serbian, Spanish, Polish, Portuguese and Turkish). It covered demographics, the illness (discovery, diagnosis, treatment and support), and health-related quality-of-life instruments: EORTC QLQ-C30 and EORTC QLQ-C29. IRB approval, where needed, was obtained at the local hospital level. Recruitment was planned by directly contacting nurses and clinicians in specific hospitals that volunteered to help recruit for the survey, or through EuropaColon partner groups (Portugal, Serbia and Turkey), or both recruitment strategies were used (Spain, Netherlands, Poland and UK). Healthcare teams were asked to inform patients about the survey and provided them with an information leaflet and patients would need to make an effort to complete the survey by visiting a dedicated web-page (europacolon.com/survey). They could either complete the survey on-line or download it, print it and complete on paper. Results: After 4 months of recruitment, because of low response alternative strategies for patient recruitment had to be initiated. Different approaches were used in different countries. In Poland, Spain and Hungary, clinicians printed the survey to give paper copies to patients who would then complete on the spot. In Spain, 4 nurses had active roles in patient recruitment. In Serbia, Serbian CRC Patient Association printed and distributed 300 copies by mail to all centers treating mCRC patients with a pre-stamped envelope for the completed survey to be returned. A nurse from the Association made weekly calls to local clinicians in order to motivate them to recruit patients. By the end of February 2018, 719 patients had completed the survey. 202 patients (28%) completed the survey on-line while 517 patients (72%) completed the paper version. The majority of surveys came from Serbia (170), Poland (163), Spain (112) and Hungary (103). Conclusion: It is possible to reach patients outside of the clinical trial setting and they are interested in expressing their views. Paper versions of the survey were preferred, especially in Central and Eastern Europe. Social media (i.e. Twitter) as a recruitment platform worked only in few Western European countries e. g. Netherlands and UK. This may reflect the access to technology across the elderly population. Patients from Central and Eastern Europe are far better motivated to express their opinion whilst in the Western countries there is greater saturation with this type of research. The recruitment will continue until the number of 1'000 patients is reached.