Understanding of metastatic colorectal cancer (mCRC) in the real world: Initial results from a European survey on the unmet needs of patients living with metastatic colorectal cancer

Abstract

Introduction: EuropaColon, a European CRC patient organisation, planned and executed a survey in 12 European countries on the Unmet Needs of Patients Living with mCRC. The aim of this patient survey was to understand the challenges and needs of those living with mCRC and their health-related quality-of-life challenges. Recruitment in Hungary, Serbia and Spain was completed. The objective of this paper is to describe basic demographics and patient responses about discovery of the disease in these four countries. Methods: The survey included sections on demographics, patient discovery of the disease, diagnosis and treatment. The section on patient discovery comprised of 13 questions, including reasons for contacting physicians, symptoms experienced, the delay between first symptoms and seeking clinical help, and misdiagnosis. IRB approval, where needed, was sought for the survey. Clinicians and nurses together with EuropaColon partner organisations recruited patients for the survey. Patients could complete either a paper-based survey or an on-line form. Data entry from the paper surveys was done by EuropaColon. Results: Altogether 578 surveys were collected and analyzed with 170 from Serbia, 163 from Poland, 112 from Spain and 103 from Hungary. Most surveys were received in paper format (80%). Completion rates varied across responses, but in general were high. Average age of patients across these countries was 70.4, ranging from 63.2 years in Spain to 81.3 in Poland. The sample included 55% men and 45% women. Most patients had a secondary education and were retired (64%). Approximately 50% of patients were diagnosed on a routine exam or due to symptoms not related to CRC, while only 4% were discovered through screening programmes. 56% of patients would have participated in screening if invited. CRC symptom awareness in the analyzed sample was very low - only 26% of patients knew what symptoms may have been associated with CRC. Although 35% of patients waited less than a month from observing symptoms, 33% waited 1-3 months, 14% waited 3-6 months and the rest even longer. Similar delays were observed for diagnosis. Importantly, 23.5% indicated that they were misdiagnosed. Overall, 48% of patients were 'very satisfied' with the process of establishing a diagnosis however, there was large variation across countries - including 35% in Hungary who were 'not satisfied at all'. Conclusion: The survey captured a large and diverse patient population and is a reflection of patients with recent experiences. Patient awareness of CRC is low, with few respondents recognizing symptoms and seeking help without delay. Misdiagnosis levels are still high. The attitude towards screening programmes is positive among patients, but despite the existence of different types of screening programmes in these countries, awareness and compliance rates are low. The understanding of CRC needs to be improved at patient level and most importantly at clinical diagnosis.