Information and prevention needs among germline TP53 (gTP53m) pathogenic variants carriers.

person Tarek Ben Ahmed Department of Cancer Medicine, Gustave Roussy, Villejuif, France info_outline Tarek Ben Ahmed, Pauline Vidican, Nadège Corradini, Christine Lasset, Veronica Goldbarg, Léa Guerrini-Rousseau, Beatrivr Claret, Béatrice Fervers, Pauline Rochefort, Suzette Delaloge, Olivier Caron

Authors person Tarek Ben Ahmed Department of Cancer Medicine, Gustave Roussy, Villejuif, France info_outline Tarek Ben Ahmed, Pauline Vidican, Nadège Corradini, Christine Lasset, Veronica Goldbarg, Léa Guerrini-Rousseau, Beatrivr Claret, Béatrice Fervers, Pauline Rochefort, Suzette Delaloge, Olivier Caron Organizations Department of Cancer Medicine, Gustave Roussy, Villejuif, France, Centre Léon Bérard, Lyon, France, Department of Pediatric Oncology, Institute of Pediatric Hematology and Oncology, Centre Léon Bérard, Lyon, France, Department of Oncogenetics, Centre Léon Bérard, Lyon, France, Gustave Roussy Cancer Centre, Villejuif, France, Prevention Environmental Cancer Department, Centre Léon Bérard, Lyon, France, Gustave Roussy, Villejuif, France Abstract Disclosures Research Funding No funding sources reported Background: Li-Fraumeni syndrome (LFS) and more generally g TP53 m situations increase the risk of many malignancies. A modifier role of several attributable factors has been recently suggested on LFS-carcinogenesis, including reproductive and lifestyle factors, obesity, physical activity (PA) and diet. However, among g TP53 m carriers, prevention approaches have yet primarily focused on intensive cancer screening, with very little emphasis put on primary prevention measures. Methods: As part of the construction of a multicenter, national, multidisciplinary intervention delivering multimodal cancer prevention to g TP53 m carriers, we designed a specific patient survey that aimed to analyze potential participants’ needs and wishes. The online questionnaire was sent to g TP53 m adult carriers already followed in two national reference centers (n=120). Participants were asked to rate their personal perception of importance and need for each item from 0 to 100 (0=not interested, 100=very interested). The questionnaire contained no identifying data and was approved by the local ethics and data protection committee. Results: The response rate was 61%. 18% were aged < 30, 71% between 30 and 60. g TP53 m had been diagnosed in the past 10 years in 29% of patients, and 11% for < 2 years. 58% had a personal history of cancer, and 18% were still receiving a treatment. The median perceived risk of new cancer was 79% for all, and 65% for those w/o a previous history of cancer. 19% did not feel comfortable to participate in information workshops with people they do not know. The median score of the main question on devoting a day to cancer risk information and primary and secondary prevention measures was 88 (95%CI 78 -96). The main desired topics (median score 69-92) were information on research programs, personal cancer risk, well-being measures, psychological aspects, and other cancer risk factors (diet, PA, etc). Wished supports were individual consultation for nutrition (score 81.5 (95%CI 59 -87.5), group workshop for risk factors (score 76 (95%CI 64 -86) and individual coaching for PA (score 76 (95%CI 71 -88.5). Demand for addictologist was low. Conclusions: This study could identify major unmet needs and very strong information-seeking behaviors among g TP53 m carriers. It enables us to co-construct a coordinated multi-professional intervention focused on proactive shared cancer prevention. In a second phase, we will assess the effectiveness and feasibility of this new personalized cancer prevention intervention.