Senta Kiermeier, Sarah Schott, Juliane Nees, Christina Dutzmann, Farina Strüwe, Christian P Kratz, Christina Sauer, Anna Fleischer, Myriam Keymling, Imad Maatouk
Li-Fraumeni syndrome (LFS) is a rare autosomal dominant cancer predisposition syndrome associated with a highly elevated lifetime cancer risk. This and the recommended intense surveillance program represent a large psychological burden on families. In order to develop targeted psychosocial interventions, we conducted a needs assessment. Adults (≥18 years) with LFS were included via regular hospital visits and online support groups and newsletters. Individuals filled out a questionnaire addressing among others: fear of progression (FoP-questionnaire, short-form), health-related quality of life (HRQoL, Short-Form Health Survey-12), distress (National Comprehensive Cancer Network distress thermometer), perceived cancer risk, and aspects of surveillance adherence...
February 13, 2024: Journal of Genetic Counseling