International and contrasting perspectives on early-onset colorectal cancer: Awareness, testing, and research priorities of survivors and caregivers.

Abstract

59 Background: Early-onset colorectal cancer (EOCRC) incidence is increasing worldwide, yet little is known about regional patterns in awareness, testing, and clinical trial referral. Methods: We administered, an online cross-sectional survey conducted in May of 2025 and analyzed responses from 400+ EOCRC survivors and caregivers across Europe, North America, and Oceania. Survivor responses were based on their lived experience and caregivers responded based on their experience as a caregiver to an affected CRC young survivor. The survey is now being targeted for further global representations. Respondents reported stage and age at diagnosis, prior knowledge of EOCRC, experiences with genetic/tumor testing, clinical trial recommendations, and research priorities. Regional and survivor–caregiver differences were assessed. Results: Most patients were diagnosed between ages 30–49 and at advanced stages. Among survivors, 44.3% were diagnosed at stage III and 29.7% at stage IV; stage IV diagnosis was most common in North America (40.8%). Caregivers reported even higher late-stage presentation, with 56.3% at stage IV, peaking at 61.1% in Europe. Younger diagnoses (<30 years) were more frequent in North America (23% survivors; 25% caregiver reports) than in Europe or Oceania. Prior knowledge of EOCRC was limited. Among survivors, 55% in Europe, 44% in North America, and 40% in Oceania knew CRC could occur before age 50. Caregivers reported even lower awareness, especially in North America (5.3%). Genetic/tumor testing discussions were common but variable: 80% of North American survivors reported these conversations, compared with 68% in Oceania and 60% in Europe. Caregivers reported higher frequencies, up to 90% in North America. Clinical trial referral remained rare. Only 15.4% of survivors overall were offered a trial (Europe 25%, Oceania 13%, North America 16.2%), despite late-stage disease. Caregivers reported higher rates, especially in Oceania (50%) and North America (55%). Research priorities were consistent across regions: early detection (80–93%) and treatment of metastatic disease (42–77%) ranked highest. Survivors additionally emphasized the gut microbiome, while caregivers prioritized health promotion/communication. Conclusions: EOCRC patients are most often diagnosed at advanced stages, with low clinical trial referral despite high testing discussions. Substantial regional and survivor–caregiver discrepancies in awareness and recall highlight communication gaps. Findings underscore urgent needs for study of causation, earlier detection strategies, equitable trial access, and patient–caregiver–centered research agendas.