Quality of life in patients at risk of medullary thyroid carcinoma and followed by a comprehensive medical network: Trends for future evaluations

Background: As shown in a previous study, the knowledge of the genetic risk in individuals belonging to families at risk of medullary-thyroid carcinom a (MTC) could be associated with impaired quality of life (QoL). Patients and methods: In the present study, we compared the QoL scores obta ined in the same period with the subjective quality of life profile (SQLP): in 82 individuals at risk of MTC who had been tested for Ret-mutations; in 200 women at risk of familial breast/ovarian cancer syndrome (BOC); and in a control population of 3501 healthy volunteers. Results:Significant differences were observed in favour of healthy voluntee rs as well as individuals at risk of MTC, over women at risk of BOC (mean s cores: 0.89, 0.85, and 0.64, respectively, P less than or equal to 0.001), but QoL scores were not statistically different between individuals at risk of MTC and the control population (P = 0.2). However, they were significan tly inferior in the subgroup of germline Ret-mutation carriers, as compared to the control population (mean scores: 0.73 and 0.89, P = 0.04). In the l atter, the relationships with the children and the family were the most imp ortant facets of their QoL. Conclusion: Our results confirm the potentially negative impact of the know ledge of the genetic risk of cancer and its consequences in terms of morbid ity and follow-up, on the QoL in people followed at oncogenetic visits.