Abstract
Lynch syndrome (LS), attenuated familial adenomatous polyposis (AFAP), and MUTYH-associated polyposis (MAP), are hereditary colorectal cancer syndromes with increased susceptibility for multiple cancers in adulthood. Genetic testing for these adult-onset colorectal cancer syndromes may be offered to the emerging adulthood demographic (ages 18-25), before the time of increased cancer risk and surveillance protocol initiation. Emerging adulthood is defined as a time of identity exploration through career planning, relationship forming, and family planning. To determine if genetic testing for a colorectal cancer syndrome during emerging adulthood is more detrimental to psychosocial functioning than testing later in life, we surveyed 241 participants through and online survey tool who had genetic testing for LS, AFAP, or MAP at different ages grouped as under 18, 18-25, 26-40, 41-60, and over 60. All respondents were recruited through the Hereditary Colon Cancer Foundation. Psychosocial functioning was assessed through quantitative and qualitative analysis of open-ended questions, which were focused into themes of 1) anxiety related to cancer risk, 2) family planning, 3) exploration, 4) career planning, and 5) forming and maintaining relationships. In the LS cohort, those who underwent genetic testing during emerging adulthood reported significantly less anxiety directly after receiving genetic testing results and today, compared to those who had testing later in life. For AFAP, however, those who had genetic testing during emerging adulthood reported significantly greater anxiety today those who had testing between ages 41-60, but no other group. Themes that emerged from qualitative analysis related to increased anxiety were living at increased cancer risk, risk to family members, and uncertainty. Factors that decreased anxiety were preventative screening/surveillance, knowledge, and acceptance. The emerging adulthood group was also significantly less likely to have had children or to have had cancer, but more likely to consider alternative reproductive options. There were no other detectable differences in levels of psychosocial functioning between groups. Taken together, this evidence is suggestive that genetic testing during emerging adulthood for adult onset colorectal cancer syndromes is not more detrimental to psychosocial functioning than testing later in life.