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Health-related Quality of Life in Newly Diagnosed Pediatric Patients With Celiac Disease

Shull, Mary H.*,‡; Ediger, Tracy R.*; Hill, Ivor D.*; Schroedl, Rose L.

Journal of Pediatric Gastroenterology and Nutrition: December 2019 - Volume 69 - Issue 6 - p 690–695
doi: 10.1097/MPG.0000000000002465
Original Article: Gastroenterology: Celiac Disease

Objectives: Celiac disease (CD) is a common chronic condition with potential adverse physical and psychosocial implications for affected children. The study purpose was to characterize health-related quality of life (HRQOL) in a large sample of pediatric patients with newly diagnosed CD using the PedsQL 4.0 Generic Core Scales, and compare it to that of healthy children and children with nonceliac gastrointestinal (GI) conditions using historic data.

Methods: The PedsQL was administered to 159 children with newly diagnosed CD and their parents at either the time of diagnostic esophagogastroduodenoscopy or before their initial dietitian appointment for gluten-free diet teaching. Mean parent-report and self-report PedsQL summary and subscale scores were calculated, then compared to published means from a sample of healthy children and a sample of children with nonceliac GI symptoms using 1-sample t tests.

Results: Compared to the healthy children, those with newly diagnosed CD had lower Total Scores, Physical Health, Psychosocial Health, Emotional Functioning, and School Functioning on parent report (P < 0.008) with similar findings on self-report. Within the CD sample, clinically significant scores were found in 55.9% for School Functioning, 62.7% for Physical Health, 54.4% for Emotional Functioning, 43.7% for Social Functioning, and 49% for Total Score.

Conclusions: Children and adolescents with newly diagnosed CD had lower HRQOL than healthy children and similar HRQOL to that of patients with nonceliac GI conditions. Patients with deficits in domains such as school or emotional functioning may benefit from early interventions including a Section 504 plan or meeting with a psychologist or social worker.

*Department of Gastroenterology, Hepatology, and Nutrition

Department of Pediatric Psychology and Neuropsychology, Nationwide Children's Hospital, Columbus, OH.

Gastroenterology, Hepatology and Nutrition Section, Children's Hospital Colorado, Aurora, CO.

Address correspondence and reprint requests to Mary H. Shull, MD, Children's Hospital Colorado, 13123 East 16th Ave, Box 290, Anschutz Medical Campus, Aurora, CO 80045 (e-mail:

Received 20 July, 2018

Accepted 28 May, 2019

Supplemental digital content is available for this article. Direct URL citations appear in the printed text, and links to the digital files are provided in the HTML text of this article on the journal's Web site (

We appreciate funding for this project from a Nationwide Children's Hospital Research Institute Intramural Grant and The Gluten-Free Gang, a local celiac disease support group, through the Nationwide Children's Hospital Foundation.

The authors report no conflicts of interest.

© 2019 by European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and North American Society for Pediatric Gastroenterology,