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

Abstract

10551 Background: Li-Fraumeni syndrome (LFS) and more generally g TP53m 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 TP53m 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 TP53m carriers, we designed a specific patient survey that aimed to analyze potential participants’ needs and wishes. The online questionnaire was sent to g TP53m 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 TP53m 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 TP53m 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.