title: Altered quality of life in Rendu-Osler-Weber disease related to recurrent epistaxis.
abstract: OBJECTIVE
  Development and validation of an epistaxis-specific quality-of-life questionnaire (EQQoL) to evaluate the impact on quality of life of epistaxis, during hereditary hemorrhagic telangiectasia (HHT).
  
  
  METHODS
  Prospective clinical study using QoL instruments administered twice in HHT patients.
  
  
  METHODS
  In total, 109 patients who had epistaxis and a clinical diagnosis of HHT according to Curacao criteria were included. Invoice of the questionnaire in 2004 and 2006 included SF-36, Jenkins` sleep scale and the new epistaxis-specific13-item EQQoL.
  
  
  RESULTS
  EQQoL uptake rate was 98%, mean score 58/100 +- 27, and Cronbach alpha 0.96. EQQoL was sensitive to change with a strong correlation with the course of epistaxis. Factorial analysis showed that EQQoL was clearly distinct from SF-36 and Jenkins sleep scales. In stepwise multivariate ordinal logistic regression, frequency and duration of epistaxis were both associated with lower EQQoL. Conversely, visceral involvement and comorbidity had independent impact on SF-36 scores, but not on EQQoL.
  
  
  CONCLUSIONS
  This new epistaxis-specific EQQoL questionnaire provides complementary information on the impact of HHT on patients quality of life relative to the SF-36 generic questionnaire. After international validation, the EQQoL might prove a useful tool for treatment evaluation.
authors: Clinical Investigation Center INSERM CIC-P 802, Centre Hospitalier Universitaire, Universite de Poitiers, France.
authors: I
authors: I
authors: Ingrand
authors: P
authors: P
authors: Ingrand
authors: B
authors: B
authors: Gilbert-Dussardier
authors: G
authors: G
authors: Defossez
authors: V
authors: V
authors: Jouhet
authors: V
authors: V
authors: Migeot
authors: X
authors: X
authors: Dufour
authors: J M
authors: JM
authors: Klossek
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D004844:Epistaxis / Q000209:etiology; D005260:Female; D006305:Health Status Indicators; D006801:Humans; D016015:Logistic Models; D008297:Male; D008875:Middle Aged; D011788:Quality of Life; D012008:Recurrence; D011795:Surveys and Questionnaires; D013683:Telangiectasia, Hereditary Hemorrhagic / Q000150:complications; D055815:Young Adult