title: Quality of life in patients at risk of medullary thyroid carcinoma and followed by a comprehensive medical network: trends for future evaluations.
abstract: BACKGROUND
  As shown in a previous study, the knowledge of the genetic risk in individuals belonging to families at risk of medullary-thyroid carcinoma (MTC) could be associated with impaired quality of life (QoL).
  
  
  METHODS
  In the present study, we compared the QoL scores obtained 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 3,501 healthy volunteers.
  
  
  RESULTS
  Significant differences were observed in favour of healthy volunteers as well as individuals at risk of MTC, over women at risk of BOC (mean scores: 0.89, 0.85, and 0.64, respectively, P < or = 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 significantly 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 latter, the relationships with the children and the family were the most important facets of their QoL.
  
  
  CONCLUSIONS
  Our results confirm the potentially negative impact of the knowledge of the genetic risk of cancer and its consequences in terms of morbidity and follow-up, on the QoL in people followed at oncogenetic visits.
authors.affiliation: Medical Oncology Unit, Centre Hospitalier Lyon-Sud, and EA 643, Université Lyon I, France. Gilles.Freyer@chu-lyon.fr
authors.forename: G
authors.initials: G
authors.lastname: Freyer
authors.forename: B
authors.initials: B
authors.lastname: Ligneau
authors.forename: M
authors.initials: M
authors.lastname: Schlumberger
authors.forename: C
authors.initials: C
authors.lastname: Blandy
authors.forename: B
authors.initials: B
authors.lastname: Contedevolx
authors.forename: V
authors.initials: V
authors.lastname: Trillet-Lenoir
authors.forename: G M
authors.initials: GM
authors.lastname: Lenoir
authors.forename: N
authors.initials: N
authors.lastname: Chau
authors.forename: A
authors.initials: A
authors.lastname: Dazord
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D001943:Breast Neoplasms / Q000235:genetics / Q000473:pathology; D018276:Carcinoma, Medullary / Q000235:genetics / Q000473:pathology* / Q000523:psychology; D016022:Case-Control Studies; D002648:Child; D004252:DNA Mutational Analysis; D004273:DNA, Neoplasm; D029721:Drosophila Proteins; D005260:Female; D005817:Genetic Counseling; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing; D006801:Humans; D008297:Male; D008875:Middle Aged; D009017:Morbidity; D010051:Ovarian Neoplasms / Q000235:genetics / Q000473:pathology; D011518:Proto-Oncogene Proteins; D051096:Proto-Oncogene Proteins c-ret; D011788:Quality of Life; D020794:Receptor Protein-Tyrosine Kinases; D012307:Risk Factors; D013315:Stress, Psychological; D013964:Thyroid Neoplasms / Q000235:genetics / Q000473:pathology* / Q000523:psychology
chemical_list: D004273:DNA, Neoplasm; D029721:Drosophila Proteins; D011518:Proto-Oncogene Proteins; D051096:Proto-Oncogene Proteins c-ret; D020794:Receptor Protein-Tyrosine Kinases; C416649:Ret protein, Drosophila