Abstract 5738: Gaps in biomarkers and health literacy among young-onset colorectal cancer patients, survivors and caregivers
Authors: Newcomer Kimberly , Springer Tamara ,   Never2Young Board, Peterson Danielle , Yarden Ronit 
Published: September 2020

The rise of young-onset colorectal cancer (YO-CRC) is an alarming public health issue. The proportion of new cases diagnosed in young people (20-49) had increased from 6% in 1990 to 11% in 2013 and coincided with the declining CRC cases in older people. YO-CRC patients face unique clinical challenges, as many are diagnosed at advanced stages of the disease and subjected to aggressive treatments. With the increase of targeted therapies and precision medicine available to them, patients.and their caregivers must understand the different treatment plans and options that could be suitable for them. So the decisions are best aligned with their unique tumor characteristics and the preferences of patients and their caregivers and articulated appropriately to providers. A cross-sectional study was conducted and patients and survivors (N=885) completed an online survey with 11 questions related to biomarkers and treatment options literacy. In addition, self-identified unrelated caregivers of YO-CRC patients (N=203) completed a similar survey. The average age of patients, survivors, and caregivers was 40-49. The majority of patients/survivors are college graduates (73%) and (40%) completed an advanced degree. Similarly, caregivers were mostly college graduates (79%) and (43%) had an advanced degree.

Despite the fact that 73% of stage IV patients felt informed before treatment began, only 54% reported they received biomarker testing before treatment was initiated. However, out of these respondents (41%) stated their provider discussed biomarker testing at diagnosis and only half were informed about their results. The majority of respondents stated they were not made aware of biomarkers from their medical team and their patient biomarker education came from an internet search (56%), a family friend (22%) or patient navigator (22%). A majority were female (91%) were more likely to have biomarkers tested than males (9%) with 60% living in a suburban area, 20% urban area and in 18% in rural areas. While many caregivers report they serve as a liaison between patients and medical information retrieval, the majority of caregivers (55%) reported that they did not fully understand the critical aspects of patients' medical treatment plans and needs.

Multiple studies have shown that patient-centered care improves patients' outcomes. Our organization promotes patient empowerment and encourages patients and their families to use medical information to develop an evidence-based treatment plan together with their physicians and care team to provide a roadmap for patients to navigate their journey. Our study identified numerous obstacles to achieving this goal. Further studies of physicians and other medical team members may shed light on reasons why the majority of patients and their caregivers reported a gap in information and understanding medical needs.

Citation Format: Kimberly Newcomer, Tamara Springer, Never2Young Board, Danielle Peterson, Ronit Yarden. Gaps in biomarkers and health literacy among young-onset colorectal cancer patients, survivors and caregivers [abstract]. In: Proceedings of the Annual Meeting of the American Association for Cancer Research 2020; 2020 Apr 27-28 and Jun 22-24. Philadelphia (PA): AACR; Cancer Res 2020;80(16 Suppl):Abstract nr 5738.