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Background Digestive Cancers Europe (DiCE), a European digestive cancers patient organisation, planned and carried out an international survey on the Unmet Needs of Patients Living with mCRC. The aim was to better understand the challenges, needs, and health-related quality of life (HRQoL) of those living with mCRC in 15 European countries. Methods Nurses and clinicians together with DiCE partner organisations recruited patients to fill in the survey (online or paper). Data collected included information on demographics, the disease discovery, diagnosis and treatment and support received. Questions on discovery and diagnoses covered reasons for contacting physicians, symptoms experience, the lag time between first symptoms and seeking clinical help, and misdiagnosis. Single data entry from paper surveys was executed by DiCE. Data were analyzed descriptively. Results 883 surveys were collected and analyzed: Austria (8), Belgium (65), Cyprus (57), Hungary (103), Ireland (3), Italy (36), Germany (22), Netherlands (40), Norway (1), Poland (163), Portugal (24), Serbia (170), Spain (112), Turkey (26) and the UK (53). Item completion rates were high. Mean time with mCRC was 2yrs. Diagnosis was established at a routine visit for 20%; at visits due to CRC-related or non-CRC related symptoms (41% and 26%); or at emergency hospitalization (19%); with only 5% through screening. CRC symptom awareness was very low: on average only 28% of patients knew before what symptoms CRC may present. Although 39% of patients waited Conclusions Awareness of patients with CRC is low, with few respondents recognising symptoms and seeking help without delay. Misdiagnosis levels are still high. Despite the existence of various screening in surveyed countries, awareness and compliance rates are low. The conditions of the discovery of mCRC need to be improved both on the patient awareness and the clinical side. Legal entity responsible for the study EuropaColon / Digestive Cancers Europe. Funding Merck, BMS, Sandoz and Sirtex. Disclosure All authors have declared no conflicts of interest. |
