The New Face of an Old Disease: A Survey of Young People regarding Early-Onset Colorectal Cancer.

Background

Colorectal cancer is now the leading cause of cancer-related deaths for people under the age of 50.

Objective

As an initial step of the Early-Onset Colorectal Cancer Awareness Campaign, the purpose of this study was to survey a large sample of members of the public age 20 to 44 to determine their baseline levels of early-onset colorectal cancer understanding as well as their comfort discussing early-onset colorectal cancer and the associated symptoms.

Design

This was an online survey conducted in December 2025, before the launch of the Early-Onset Colorectal Cancer Awareness Campaign, to establish baseline measures. MAIN OUTCOME MEASURES Baseline demographics were collected, including age, gender, race/ethnicity, region, and survey language. Survey measures were developed based on the Health Belief Model, focus group findings, and subject matter expert review.

Participants

Participants aged 20 to 44 were recruited from a respondent panel maintained by a market-research vendor, and recruitment was stopped after meeting a quota of 1,000 respondents. Healthcare providers were excluded.

Results

A total of 1,000 respondents were included with even distribution of age and sex. The survey was taken in Spanish by 27%. Overall awareness of colorectal cancer (CRC) and early-onset colorectal cancer was low (41 and 24%, respectively). Knowledge of family history was low for colorectal cancer (22%) as well as colorectal polyps (17%). Twenty-nine percent of respondents had not heard of any symptoms of colorectal cancer while 36% identified rectal bleeding and 29% identified changes in stool habits as symptoms of colorectal cancer. Only 22% of respondents had looked for information on colorectal cancer within the last year. Female respondents felt less comfortable than their male counterparts discussing early-onset colorectal cancer with a healthcare provider (55 vs 67%, p = 0.017) or with their friends and family (56% vs 67%, p = 0.025). When asked about potential reasons to avoid or postpone a colonoscopy, respondents reported concerns about cost (69%), risk of complications (68%), fear of a cancer diagnosis (68%), and mistrust of the health care system (57%).

Limitations

The limitations of the study include the use of an opt-in survey, as this requires a self-selected group of respondents with potential differences in health literacy, digital engagement, and survey-taking behavior from the public.

Conclusions

Currently, people under the age of 45 have a low overall understanding of early-onset colorectal cancer, and most are unaware of their own family history of colorectal cancer and colon polyps. Several important roadblocks to gaining information and/or seeking care for early-onset colorectal cancer were also identified. These findings will be used to inform future efforts of the Early-Onset Colorectal Cancer Awareness Campaign. See Video Abstract.