Impact of familial adenomatous polyposis on young adults: Attitudes toward genetic testing, support, and information needs

PURPOSE: The study assessed views concerning genetic testing and information and support needs among young adults aged 18 to 35 years with a diagnosis of or at risk of developing familial adenomatous polyposis. METHODS: A total of 88 participants were recruited through Hereditary Bowel Cancer Registries and assessed using self-administered questionnaires. RESULTS: The average age of participants was 28 years, and the average age at the time of their last genetic consultation was 23 years. Although 75% would consider prenatal genetic testing, only 21% would consider termination of an affected pregnancy. Sixty-one percent selected "at birth" or "early childhood" as the preferred age for genetic testing of offspring. Participants' highest areas of unmet support needs were with regard to anxiety about their children having familial adenomatous polyposis (39%) and fear of developing cancer (28%). CONCLUSION: The parental desire to test children before it is clinically indicated may be a source of distress and create conflict with genetic services. These findings demonstrate that familial adenomatous polyposis may significantly impact young adults, with many having unmet support needs. The length of time since the last genetic consultation and the young age at which these consultations took place suggest that clinics should consider a means of regular follow-up to address these unmet needs.