Understanding the unmet needs in colorectal cancer: Insights from patient and survivor experiences.

Abstract

59 Background: Colorectal cancer (CRC) is the fourth most commonly diagnosed cancer and the second leading cause of cancer-related deaths worldwide among men and women combined. Despite improved survival rates, there remains a gap in understanding the specific unmet needs of CRC patients and survivors. These needs include emotional support, information on treatment options, coping strategies, quality of life (QoL), and overall healthcare experience. The stress of a diagnosis is often compounded by the emotional and physical demands of treatment, which extend into survivorship when the disease is not active. Methods: The Colorectal Cancer Alliance launched a survey for colorectal cancer patients, survivors, and caregivers. This IRB-approved cross-sectional study, comprising more than 153 questions, aimed to inform on patient profiles, diagnosis experience, resources, QoL, access to care, and treatment experience. Participation in the survey was solicited from the Alliance network of social media, email, and web-based communities, underscoring the collective effort to understand and address the needs of CRC patients and survivors. Results: The survey included 283 participants, primarily aged 46-55. Key findings showed that 74% of participants had difficulty finding someone who understood their experience, and 41% reported reduced support from others after treatment ended. Additionally, 54% struggled with fatigue, and 51% coped with ongoing stress. CRC significantly impacted careers (64%), dating lives (51%), desire to have children (43%), relationships with spouses or partners (58%), sex lives (80%), and participation in social activities (65%). Although many felt informed before treatment, 46% reported unmet needs for information on complementary or alternative therapies. Conclusions: These results highlight the profound psychosocial and physical challenges faced by CRC patients and survivors, emphasizing the need for healthcare providers to develop tailored treatment and survivorship plans and comprehensive support services. Insights from this survey will guide the Colorectal Cancer Alliance (Alliance) in creating targeted actions, care programs, and support initiatives to address these needs. The Alliance aims to enhance patient care and improve CRC patients' and survivors' QoL, potentially reshaping the future of CRC management and survivorship care.