Open AccessMeasuring Quality of Life in Pediatric Patients With Inflammatory Bowel Disease: Psychometric and Clinical Characteristics
Author(s) -
Perrin James M,
Kuhlthau Karen,
Chughtai Aziz,
Romm Diane,
Kirschner Barbara S,
Ferry George D,
Cohen Stanley A,
Gold Benjamin D,
Heyman Melvin B,
Baldassano Robert N,
Winter Harland S
Publication year - 2008
Publication title -
journal of pediatric gastroenterology and nutrition
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.206
H-Index - 131
eISSN - 1536-4801
pISSN - 0277-2116
DOI - 10.1097/mpg.0b013e31812f7f4e
Subject(s) - medicine , quality of life (healthcare) , exploratory factor analysis , confirmatory factor analysis , disease , inflammatory bowel disease , psychometrics , ulcerative colitis , cross sectional study , reliability (semiconductor) , physical therapy , structural equation modeling , clinical psychology , pathology , power (physics) , statistics , physics , nursing , mathematics , quantum mechanics
Objective: To extend development of a pediatric inflammatory bowel disease (IBD) health‐related quality of life (HRQoL) measure by determining its factor structure and associations of factors with generic HRQoL measures and clinical variables. Patients and Methods: Cross‐sectional survey of children and adolescents ages 8 years to 18 years and their parents attending any of 6 US IBD centers, recruited from either existing registry of age‐eligible subjects or visits to participating centers. The survey included generic (Pediatric Quality of Life Inventory) and IBD‐specific (Impact Questionnaire) quality of life measures, disease activity, and other clinical indicators. We carried out factor analysis of Impact responses, comparing resulting factors with results on the generic HRQoL and the clinical measures. Results: We included 220 subjects (161 with Crohn disease and 59 with ulcerative colitis). Initial confirmatory factor analysis did not support the 6 proposed Impact domains. Exploratory factor analysis indicated 4 factors with good to excellent reliability for IBD responses: general well‐being and symptoms, emotional functioning, social interactions, and body image. Two items did not load well on any factor. The 4 factors correlated well with the Pediatric Quality of Life Inventory and subscales. Children with higher disease activity scores and other indicators of clinical activity reported lower HRQoL. Conclusions: This study provides further characteristics of a HRQoL measure specific to pediatric IBD and indicates ways to score the measure based on the resulting factor structure. The measure correlates appropriately with generic HRQoL measures and clinical severity indicators.