Young-Onset Colorectal Cancer Survivors, Patients, and Caregivers Asked to Participate in Third Annual Survey

Key Points

  • Surveys have revealed trends in the experience of young-onset colorectal cancer survivors, including that 82% of respondents said they were initially misdiagnosed, 79% suffered from anxiety and/or depression, and 45% cared for a child under 10 at diagnosis.
  • The third annual Colorectal Cancer Alliance survey of this population seeks to also better learn about the experience of caregivers.

The Colorectal Cancer Alliance has opened its third annual international survey of young-onset colorectal cancer patients, survivors, and caregivers, with the intent of learning about and tracking the medical and psychosocial experiences of this often overlooked group, which comprises 11% of patients with colorectal cancer today.

This year’s survey is expanded to better learn about the experience of caregivers, with a selection of questions specifically for them. The Alliance asks that just one caregiver per patient fill out the survey.

Previous surveys revealed trends in the experience of young-onset colorectal cancer survivors, including that 82% of respondents said they were initially misdiagnosed, 79% suffered from anxiety and/or depression, and 45% cared for a child under 10 at diagnosis.

Need for Education

“The young-onset community is growing, sadly, and we must know as much about their journey as possible, so we can respond to their needs,” said Kim Newcomer, manager of the Alliance’s Never Too Young program. “That 82% of young-onset patients said they were misdiagnosed shows, for example, a critical need to educate medical providers that their patients could be impacted by colorectal cancer, no matter their age. When I received my stage IV metastatic diagnosis, I was 35. I’ve seen this disease in people as young as 12.”

Colorectal cancer patients are considered young-onset if they are diagnosed before they turn 50 years old. Since 1994, cases of young-onset colorectal cancer have increased by 51%, according to the National Cancer Institute. Researchers aren’t sure why, but the Alliance is funding research to help uncover a cause—it will fund $10 million in colorectal cancer research by 2021, including $3 million specifically for young-onset research.

In addition, the Alliance founded the Never Too Young Advisory Board, which will address the needs and concerns of the young-onset community.

“The Alliance stands with the thousands of young-onset patients diagnosed every year, and this survey is a critical component to improving the medical outcomes for those affected by this senseless killer,” said Michael Sapienza, Chief Executive Officer of the Alliance. “I encourage all young-onset patients, survivors, and caregivers to participate in this survey and let their voices be heard—the world needs to hear you.”

The survey, available at bit.ly/N2Ysurvey, will remain open for 4 weeks. The brief survey, which is multiple-choice, should take fewer than 10 minutes to complete.  

The content in this post has not been reviewed by the American Society of Clinical Oncology, Inc. (ASCO®) and does not necessarily reflect the ideas and opinions of ASCO®.


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