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.

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Publication Details

Journal
Diseases of the Colon & Rectum
Published
2026-10-14
DOI
https://doi.org/10.1097/dcr.0000000000004497
Primary Topic
Colorectal Cancer Screening and Detection
Type
article
Field-Weighted Citation Impact
0.00
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article

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

Memi Miscally, Sean Joseph Langenfeld, Kirsten Bass Wilkins, Mika Kadono et al.
Diseases of the Colon & Rectum
Colorectal Cancer Screening and Detection
article

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

Memi Miscally, Sean Joseph Langenfeld, Kirsten Bass Wilkins, Mika Kadono, Heather M. Dahlen, Zoe Garoufalia, Carly Raasch, Sophia Zigouras, J. Joshua Smith
article en

Abstract

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.

Diseases of the Colon & Rectum
Albert Einstein College of Medicine (US), Montefiore Medical Center (US), The University of Texas MD Anderson Cancer Center (US), Overlook Medical Center (US), Johnson University (US), Ippokrateio General Hospital of Thessaloniki (GR), Colon and Rectal Surgery Associates (US), Hippocration General Hospital (GR), University of Nebraska Medical Center (US)
Good health and well-being
Openalex Percentile: Top 17%
Colorectal Cancer Screening and Detection
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