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

Authors

Kim Newcomer

Kim Lynn Newcomer

Colorectal Cancer Alliance, Washington, DC

Kim Lynn Newcomer , Laura Diane Porter

Organizations

Colorectal Cancer Alliance, Washington, DC, Colorectal Cancer Alliance, Cheverly, MD

Research Funding

No funding received
None

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.

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Abstract Details

Meeting

2021 Gastrointestinal Cancers Symposium

Session Type

General Session

Session Title

Are We Really Making Progress in Early-Onset Colorectal Cancer?

Track

Cancers of the Colon, Rectum, and Anus

Sub Track

Patient-Reported Outcomes and Real-World Evidence

Citation

J Clin Oncol 39, 2021 (suppl 3; abstr 5)

DOI

10.1200/JCO.2021.39.3_suppl.5

Abstract #

5

Abstract Disclosures

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