Colonoscopy Screening Rates, Perceived Risk and Cancer-Related Stress/Distress in Unaffected Members of High Risk Colorectal Cancer (CRC) Families

Abstract

Purpose: A strong family history (FH) of CRC is an important risk factor for the disease as well as a potential source of cancer-related stress and distress. Colonoscopy is the recommended screening test in people with a strong FH of CRC. Little is known about adherence to colonscopy screening, perceptions of CRC risk and cancer-related distress in this population. Aims: To determine screening rates, perceived CRC risk and cancer-related stress and distress in members of high risk CRC families and to determine if these parameters vary by demographic factors. Methods: Baseline data was analyzed from the Family Health Promotion Project, a multi-center randomized intervention trial designed to promote colonoscopy in members of families at high risk for CRC. Two National Cancer Institute funded registries (Colorectal Cancer Family Registry and Cancer Genetics Network) were used to recruit unaffected members of families that met the Amsterdam II criteria for HNPCC and high risk (HR) families (one member with CRC under age 60 or >2 FDRs with CRC that do not meet Amsterdam II criteria). 632 participants (166 HNPCC and 466 HR) completed a baseline questionnaire which included questions about demographics, colonoscopy screening rates, perceived CRC risk as well as measures of cancer related stress and distress using the Impact of Events Scale (IES). Results: The overall rate of adherence to current colonoscopy screening recommendations was 52% and 44% in the HNPCC and HR groups respectively. 68% of the HNPCC group thought their risk was much higher and 79% of the HR group thought their risk was either much (24%) or a little (35%) higher than people without a FH of CRC. 18% of the HNPCC group and 44% of the HR group reported moderate to high levels of stress related to their FH of CRC. Higher levels of stress in both groups were more commonly found in women than men (p<.0001) and in participants with a lower income (p=.01). Very high levels of cancer related distress (IES scores >20; a level that usually prompts a counseling referral) were reported by 28% of the HNPCC group and 30% of the HR group. IES scores >20 in both groups were more commonly found in women than men (37 vs. 16%, p<0.0001), in participants with lower income (p=.02), lower levels of education (p=.0003) and in those without health insurance (69 vs. 27%, p=.03). Conclusion: Unaffected members of high risk CRC families generally recognized they are at risk for the disease but had relatively low rates of adherence to colonoscopy screening guidelines. Additionally, high levels of cancer-specific distress and stress are present in this population, particularly in women and lower SES groups.