Parental Distress and Quality of Life in Pediatric Inflammatory Bowel Disease: Implications for the Outpatient Clinic.

Objectives: The interrelation between the course of Inflammatory Bowel Disease (IBD) in children and parent's distress, and the subsequent impact this may have on Health-Related Quality Of Life (HRQOL) of the child is unclear. Therefore, we investigated (I) patient's HRQOL and parental distress, and (II) the association between the course of IBD, parental distress, and HRQOL of pediatric IBD patients. Methods: Pediatric IBD patients (8-18 years) and parents were invited. Patients completed the Pediatric Quality of Life Inventory, and parents the Distress Thermometer for Parents, simultaneously. Disease course was expressed as current clinical disease activity or months since last IBD flare. Patient's HRQOL and parental distress were compared to healthy controls. Results: In total, 87 patients (71% response rate, 59% male, median age 15.2 years) and parents were included. Patients had an impaired total HRQOL ([beta] = 0.125, p = 0.010), driven by lower physical ( = 0.196, p = 0.001) and school ([beta] = 0.232, p

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