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Development and Validation of a Celiac Disease Quality of Life Instrument for North American Children

Jordan, Nicole E.*; Li, Yuelin; Magrini, Danielle; Simpson, Suzanne§; Reilly, Norelle Rizkalla§; DeFelice, Amy R.§; Sockolow, Robbyn*; Green, Peter H.R.§

Journal of Pediatric Gastroenterology and Nutrition: October 2013 - Volume 57 - Issue 4 - p 477–486
doi: 10.1097/MPG.0b013e31829b68a1
Original Articles: Gastroenterology

Objective: Given the social constraints imposed by a gluten-free diet, it can be hypothesized that children with celiac disease (CD) living in the United States have a reduced health-related quality of life (HRQOL); however, there is no validated CD-specific HRQOL instrument for children living in the United States. The goals of this study were to develop and validate a CD-specific HRQOL instrument for children 8 to 18 years of age with CD and to report HRQOL in these children using both generic- and disease-specific instruments.

Methods: This was a prospective study using focus group methodology to develop a CD-specific HRQOL instrument that was then administered to children 8 to 18 years of age with CD living throughout the United States. Instrument validation methods included construct, convergent, and divergent validities.

Results: Two instruments were developed: CD-specific pediatric HRQOL instrument (CDPQOL) 8 to 12 and CDPQOL 13 to 18. A total of 181 children with CD completed the CDPQOL as well as a comparator generic instrument. Exploratory factor analysis restructured the CDPQOL and reduced the total number of items. The CDPQOL showed a moderate agreement with the Psychosocial dimensions of the generic instrument confirming convergent validity and low-to-moderate agreement with the Physical Health Summary dimension of the generic instrument confirming divergent validity.

Conclusions: The CDPQOL, consisting of 13 to 17 questions, is a validated instrument for the measurement of HRQOL in children 8 to 18 years of age with CD living in the United States.

*New York-Presbyterian Hospital, Weill Cornell Medical Center

Department of Psychiatry and Behavioral Sciences, Memorial Sloan-Kettering Cancer Center, New York, NY

Bristol-Myers Squibb Children's Hospital, Robert Wood Johnson Medical Center, New Brunswick, NJ

§Celiac Disease Center at Columbia University, New York, NY.

Address correspondence and reprint requests to Peter H.R. Green, MD, Celiac Disease Center at Columbia University, 180 Fort Washington Avenue, Suite 956, New York, NY 10032 (e-mail:

Received 9 June, 2012

Accepted 9 May, 2013

The authors report no conflicts of interest.

© 2013 by European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and North American Society for Pediatric Gastroenterology,