Understanding and addressing unmet needs in colorectal cancer: Findings from the Colorectal Cancer Alliance’s Patient and Survivor survey.

Abstract

3576 Background: Colorectal cancer (CRC) is the third most commonly diagnosed cancer and the second leading cause of cancer-related deaths worldwide. Despite advances in survival rates, CRC patients and survivors often face unmet needs, including emotional support, coping strategies, and access to treatment-related information. Beyond physical challenges, patients report emotional distress, disruptions to quality of life (QoL), and difficulty navigating the healthcare system. Even after remission, survivors frequently struggle with lingering psychosocial and physical impacts. Methods: The Colorectal Cancer Alliance conducted an IRB-approved cross-sectional survey to assess the needs of CRC patients, survivors, and caregivers. The survey included over 150 questions about demographics, diagnosis experiences, QoL, access to care, and treatment outcomes. Participants (n = 283) were recruited through the Alliance’s social media, email campaigns, and online communities to ensure diverse representation. Results: The study revealed critical insights into the challenges faced by CRC patients and survivors. The median age group of participants was 46–55. Most respondents (74%) reported difficulty finding someone who could understand and relate to their experience. Furthermore, 41% noted a reduction in support from others after their treatment ended. Many participants faced ongoing challenges, with 54% reporting fatigue and 51% experiencing stress. CRC had a profound impact on several aspects of life: 64% said it negatively affected their career or work life, 58% cited negative effects on their relationship with a spouse or partner, 80% reported a decline in their sex life, and 65% struggled to participate in social activities. Additionally, 51% noted challenges with dating, and 43% indicated that their cancer journey affected their desire to have children. While most patients felt informed before treatment, 46% expressed unmet needs for information on complementary or alternative therapies. These findings highlight the broad and far-reaching effects of CRC on patients and survivors, revealing significant gaps in emotional, psychosocial, and informational support. Conclusions: CRC patients and survivors face substantial unmet needs that significantly affect their quality of life and well-being. The Colorectal Cancer Alliance plans to use these insights to develop care programs and targeted support initiatives designed to address these gaps. By tailoring resources to the unique needs of patients and survivors, these efforts aim to improve outcomes and offer hope for a better future for those affected by CRC.