MedicalResearch.com Interview with:
Ronit Yarden, PhD, MHSA
Director of Medical Affairs
Colorectal Cancer Alliance, a patient advocacy organization
MedicalResearch.com: What is the background for this study? What are the main findings?
Response: The colorectal Cancer Alliance is a patient advocacy group (the largest advocacy group for colorectal cancer) and its mission is to provide support to patients, survivors, their caregivers and family members as well as advocate on their behalf for. The organization is also committed to raise awareness for screening and early detection of colorectal cancer to help save lives and to provide funding for innovative colorectal cancer research.
As part of our support we sought to identify some of the clinical, emotional and financial experiences and unmet needs of patients under 50 years old. We conducted an online survey that was promoted through social media and 1195 patients and survivors completed our survey.
MedicalResearch.com: What should readers take away from your report?
Response: Our study uncovered that:
- Both medical professionals and the public are not fully aware of the risk of young-onset colorectal cancer. Patients did not associate their symptoms with cancer and majority waited for more than 3 months before reaching to their doctor. But even after they reached out for medical provider, they were often dismissed or misdiagnosed which delayed time to diagnosis.
- We also found that many of young -onset patients are diagnosed with advanced diseased (stage III and stage IV) which will require more aggressive treatments and could impact their survivorship.
3.The increased risk of colorectal l cancer to first degree relatives of patients was not always explained.
- Not surprisingly, the diagnosis had negative impact on young patients and survivors (80% have children under the age of 18) quality of life and many experienced psychosocial and financial stress.
MedicalResearch.com: What recommendations do you have for future research as a result of this work?
Response: We plan to further analyze our data and determine whether certain demographics could have influenced certain experiences and outcomes. The study clearly suggest the need to increase awareness to the rising incidence of young-onset colorectal cancer.
Citation: AACR 2019 abstract
Young onset colorectal cancer patients are diagnosed with advanced disease after multiple misdiagnoses
Ronit I. Yarden, Kim L. Newcomer, Never Too Young Advisory Board, Colorectal CancerAlliance.
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