title: Development and validation of a celiac disease quality of life instrument for North American children.
abstract: 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.
authors.affiliation: *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.
authors.forename: Nicole E
authors.initials: NE
authors.lastname: Jordan
authors.forename: Yuelin
authors.initials: Y
authors.lastname: Li
authors.forename: Danielle
authors.initials: D
authors.lastname: Magrini
authors.forename: Suzanne
authors.initials: S
authors.lastname: Simpson
authors.forename: Norelle Rizkalla
authors.initials: NR
authors.lastname: Reilly
authors.forename: Amy R
authors.initials: AR
authors.lastname: Defelice
authors.forename: Robbyn
authors.initials: R
authors.lastname: Sockolow
authors.forename: Peter H R
authors.initials: PH
authors.lastname: Green
mesh_terms: D000203:Activities of Daily Living; D000293:Adolescent; D002446:Celiac Disease / Q000150:complications / Q000523:psychology; D002648:Child; D005260:Female; D017144:Focus Groups; D006262:Health; D006801:Humans; D008297:Male; D011446:Prospective Studies; D011788:Quality of Life; D011795:Surveys and Questionnaires / Q000592:standards*; D014481:United States