A delayed path to diagnosis: Findings from young-onset colorectal cancer patients and survivors.

Abstract

5 Background:Colorectal cancer (CRC) is the second-leading cause of cancer-related death among males and females in the US. Despite a decrease in overall incidence and mortality, there has been an alarming increase of CRC diagnosis among young adults (20-49 years old). In an article from 2014, authors predicted an increase in colon cancer diagnosis in people under the age of 50 with the largest increase in the 20-34-year age group of 37.8% and 90.0% by 2020 and 2030, respectively. The increase for rectal cancer is higher in the 20-34-year age group by 2020 and 2030 it is estimated to increase by 49.7% and 124.2% respectively. The Colorectal Cancer Alliance launched a comprehensive survey for Young-Onset Colorectal Cancer (YO-CRC) patients and survivors to capture self-reported experiences of this often overlooked population. Methods:The survey was completed by 1089 patients, survivors and caregivers. Questions were designed based on several established and validated instruments, including AYA-HOPE, EORTC-QOL-30, EORTC-CR-29, EORTC-SHC-22, PROMIS-29, FACT-C, and COH-47. The final survey instrument and study plan were reviewed and approved by the Aspire, Inc. Institutional Review Board. Results:Most respondents (62%) waited 3-12 months before visiting a doctor after they noticed symptoms. Furthermore, when patients visited their doctors, most indicated that they were initially misdiagnosed. Many patients reported they had to see multiple doctors and had multiple appointments before they were correctly diagnosed with YO-CRC. The majority of the respondents (75%) saw at least 2 physicians, and about 20% saw 4 physicians or more, prior to their diagnosis. Patients who saw 3 or more physicians prior to diagnosis were more likely to be diagnosed with advanced disease. Conclusions:The findings expose a critical issue of YO-CRC patients being diagnosed at late stages. This is often due to multiple challenges around misinformation and medical providers dismissing symptoms and not trusting the patients' self-knowledge. Medical professionals need to be aware of the possibility of colorectal cancer more readily and screen patients regardless of age. The Colorectal Cancer Alliance is dedicated to working with all stakeholders and is committed to supporting researchers who are leaders in the field to better understand YO-CRC, as well as research that looks at improved therapies for those in treatment to improve outcomes.