Details

Autor(en) / Beteiligte

• Vriezinga, Sabine L.
• Farih, Nora
• Meulen‐de Jong, Andrea E.
• Putter, Hein
• Rings, Edmond H.H.M.
• Schaart, Maaike W.
• Schweizer, Joachim J.
• Wessels, Margreet M.S.
• Mearin, M. Luisa

Titel

Comparison of Patients’ and Doctors’ Reports on Health‐related Quality of Life in Celiac Disease

Ist Teil von

• Journal of pediatric gastroenterology and nutrition, 2017-05, Vol.64 (5), p.737-741

Ort / Verlag

United States: by European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and North American Society for Pediatric Gastroenterology

Erscheinungsjahr

2017

Quelle

Wiley Online Library - AutoHoldings Journals

Beschreibungen/Notizen

• ABSTRACT Objective: 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. Methods: 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. Results: 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. Conclusions: 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.