Description:
<jats:title>ABSTRACT</jats:title><jats:sec><jats:title>Objective:</jats:title><jats:p>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.</jats:p></jats:sec><jats:sec><jats:title>Methods:</jats:title><jats:p>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. Primary outcome: agreement between physician‐reported and self‐reported HRQOL. Secondary outcomes: patient variables predicting a discrepancy between reports, or a lower HRQOL.</jats:p></jats:sec><jats:sec><jats:title>Results:</jats:title><jats:p>Physician‐reported HRQOL was available in 70 of 78 enrolled patients. The self‐reported and physician‐reported HRQOL were concordant in 30 of 70 (<jats:italic>K</jats:italic> = 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, <jats:italic>P</jats:italic><0.001) and in females (35/40 with discrepant reports were girls versus 16 of 30 with no discrepancy, <jats:italic>P</jats:italic> = 0.001). Both factors were predictors of a poorer HRQOL.</jats:p></jats:sec><jats:sec><jats:title>Conclusions:</jats:title><jats:p>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.</jats:p></jats:sec>