In:
Journal of Pediatric Gastroenterology & Nutrition, Ovid Technologies (Wolters Kluwer Health), Vol. 64, No. 5 ( 2017-05), p. 737-741
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. 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.
Type of Medium:
Online Resource
ISSN:
0277-2116
,
1536-4801
DOI:
10.1097/MPG.0000000000001355
Language:
English
Publisher:
Ovid Technologies (Wolters Kluwer Health)
Publication Date:
2017
detail.hit.zdb_id:
2078835-6
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