Alliances Releases Never Too Young Survey Report

Today, during Young Survivors Week, national leading non-profit Colorectal Cancer Alliance released findings from its latest survey of young-onset colorectal cancer patients and survivors. The Never Too Young Survey Report shares the self-reported medical, psychosocial, and quality of life experiences of this often-overlooked population to better understand their challenges and needs.

Young-onset colorectal cancer refers to individuals diagnosed under the age of 50. The Alliance first launched the trailblazing young-onset colorectal cancer survey in 2016. Alliance research has shown young-onset colorectal cancer patients are increasingly diagnosed with advanced disease requiring aggressive treatment in comparison to those diagnosed after 50, the age to begin screening according to guidelines by the U.S. Preventive Services Task Force.

The Alliance’s latest Never Too Young Survey Report, based on data from a 2019 survey, provides key young-onset trends and findings. Among patient and survivors who responded to the survey:

49% indicated they had no knowledge about the signs and symptoms of colorectal cancer before their diagnosis

75% of patients and survivors reported they saw at least two different physicians, and 36% were seen by three or more physicians, before receiving a correct diagnosis

40% of patients and survivors expressed that their providers dismissed their symptoms and concerns

Younger patients diagnosed between the ages of 19-39 were more likely to report that their concerns were dismissed by their doctors

The most common misdiagnosis among participants are hemorrhoids, followed by irritable bowel syndrome (IBS) and anemia

Nearly 75% of survey participants shared that they have been concerned about their mental health.

Colorectal cancer incidence has increased in people 20-39 years old since the mid-1980s and among those 40-54 years old since the mid-1990s. The steepest increase has been in the younger age groups. In recent years, the incidence has increased by 2.2% annually in individuals younger than 50 years old and 1% in individuals 50-64 years old, in contrast to a 3.3% decrease in people 65 years old and older.

885 patients and survivors completed the survey that included up to 140 questions. The majority of patient/survivor respondents (83%) were first-time survey participants. The 2019 survey included questions for caregivers, as it did for the first time in 2018. A separate report with those findings will be released by the Alliance later this year.

“The Never Too Young Survey Report is a critical tool in advancing our mission to end colorectal cancer in our lifetime,” said Michael Sapienza, CEO of the Colorectal Cancer Alliance. “Change is inspired by stories, and stories are fortified with data. Here we have real-world evidence on the traumatic impact of colorectal cancer on our young people, amplifying their stories and drawing attention to policy and healthcare improvements that will save lives.”

“The Never Too Young Survey Report illustrates the many ways young-onset colorectal cancer forever changed my life and the lives of so many others,” said Kim Newcomer, Never Too Young Program Manager at the Alliance. “The data presented within the Never Too Young Survey Report is one of the most compelling cases for why we must end this disease. I'm so thankful for everyone who participated and let their voice be heard.”

Several important gaps throughout the colorectal cancer journey and survivorship experience were identified through this survey. The findings further exposed a critical issue that young-onset colorectal cancer patients are diagnosed at late stages. This occurs due to multiple challenges around misinformation and medical providers dismissing symptoms brought forward by patients. Young-onset patients also wait to see their doctor after symptoms arise, and when they do seek medical advice, they frequently find that they receive incorrect diagnoses and that it requires multiple visits and numerous providers before finally getting to an accurate diagnosis. This indicates a knowledge gap, both among the public and the medical community, to identify early signs and symptoms of young-onset colorectal cancer. It is critical that these colorectal cancer symptoms move to the forefront of cancer education.

Lastly, the survey findings highlighted the unique challenges of cancer treatment for younger patients around fertility and sexual dysfunction, as well as pain and wellness beyond the course of treatment. Many patients still felt uninformed prior to or during treatment, even though the majority of young-onset patients indicate ongoing pain and side effects that change the trajectory of their daily life, and outcomes related to sexual function and/or reproductive health.

Colorectal cancer is the third-most commonly diagnosed cancer and the second-leading cause of cancer death in men and women combined in the United States. In its early stages, colorectal cancer is very treatable, with a five-year survival rate of 90%, making it highly preventable through early detection. On average, the lifetime risk of developing colorectal cancer is about one in 23 for men and one in 25 for women; however, this varies widely according to individual risk factors.

The Colorectal Cancer Alliance is dedicated to working with all stakeholders, including policymakers, to address the unmet needs in the unique and often overlooked young-onset population of colorectal cancer patients and survivors to improve their outcomes.

The full survey report can be viewed here.