title: Comparison of Patients' and Doctors' Reports on Health-related Quality of Life in Celiac Disease.
abstract: To investigate whether implementation of a celiac disease (CD)-specific health-related quality of life (HRQOL) questionnaire would add value to CD follow-up visits; we compared patients' self-reported CD-specific HRQOL with the physician's report provided during a regular CD follow-up visit in children and young adults.
  
  
  
  A cross-sectional study in the control group of a study on self-management in CD (CoelKids). Eligible patients had CD for ≥1 year and were 25 years or younger. They completed a CD-specific HRQOL questionnaire (CDDUX) after their regular follow-up visit. Their physicians were unaware of the present study's objectives or self-reported HRQOL.
  
  
  
  agreement between physician-reported and self-reported HRQOL.
  
  
  
  patient variables predicting a discrepancy between reports, or a lower HRQOL.
  
  
  
  Physician-reported HRQOL was available in 70 of 78 enrolled patients. The self-reported and physician-reported HRQOL were concordant in 30 of 70 (K = 0.093), 6 of them had a poor self-reported HRQOL. Reports were discrepant in 40 of 70; all 40 self-reported a poor HRQOL. Discrepancies occurred more frequently in patients with a disease duration <9 years (32/40 with discrepant reports were diagnosed <9 years ago vs 17/30 with no discrepancy, P<0.001) and in females (35/40 with discrepant reports were girls versus 16 of 30 with no discrepancy, P = 0.001). Both factors were predictors of a poorer HRQOL.
  
  
  
  During regular CD follow-up visits, physicians did not report a poor HRQOL in 40 of 46 children and young adults with a poor self-reported HRQOL. This is consistent with previous studies examining other chronic diseases and supports the implementation of self-reported CD-specific HRQOL measurements in CD follow-up visits.
authors.affiliation: *Department of Paediatrics †Department of Gastroenterology and Hepatology ‡Department of Medical Statistics, Leiden University Medical Center, Leiden §Department of Paediatrics, Sophia Children's Hospital, Erasmus Medical Center, Rotterdam ||Department of Paediatrics, Rijnstate Hospital, Arnhem, The Netherlands.
authors.forename: Sabine L
authors.initials: SL
authors.lastname: Vriezinga
authors.forename: Nora
authors.initials: N
authors.lastname: Farih
authors.forename: Andrea E
authors.initials: AE
authors.lastname: van der Meulen-de Jong
authors.forename: Hein
authors.initials: H
authors.lastname: Putter
authors.forename: Edmond H H M
authors.initials: EHHM
authors.lastname: Rings
authors.forename: Maaike W
authors.initials: MW
authors.lastname: Schaart
authors.forename: Joachim J
authors.initials: JJ
authors.lastname: Schweizer
authors.forename: Margreet M S
authors.initials: MMS
authors.lastname: Wessels
authors.forename: M Luisa
authors.initials: ML
authors.lastname: Mearin
mesh_terms: D000293:Adolescent; D000328:Adult; D002446:Celiac Disease; D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D005260:Female; D006305:Health Status Indicators; D006801:Humans; D008297:Male; D015999:Multivariate Analysis; D010817:Physician-Patient Relations; D010820:Physicians; D011788:Quality of Life; D057566:Self Report; D055815:Young Adult