Developing Item Banks for Measuring Pediatric Generic Health-Related Quality of Life: An Application of the International Classification of Functioning, Disability and Health for Children and Youth and Item Response Theory

Abstract

The purpose of this study was to develop item banks by linking items from three pediatric health-related quality of life (HRQoL) instruments using a mixed methodology. Secondary data were collected from 469 parents of children aged 8-16 years. The International Classification of Functioning, Disability and Health-Children and Youth (ICF-CY) served as a framework to compare the concepts of items from three HRQoL instruments. The structural validity of the individual domains was examined using confirmatory factor analyses. Samejima's Graded Response Model was used to calibrate items from different instruments. The known-groups validity of each domain was examined using the status of children with special health care needs (CSHCN). Concepts represented by the items in the three instruments were linked to 24 different second-level categories of the ICF-CY. Eight item banks representing eight unidimensional domains were created based on the linkage of the concepts measured by the items of the three instruments to the ICF-CY. The HRQoL results of CSHCN in seven out of eight domains (except personality) were significantly lower compared with children without special health care needs (p<0.05). This study demonstrates a useful approach to compare the item concepts from the three instruments and to generate item banks for a pediatric population.

Common content between quality of life questionnaires for children with cystic fibrosis and the International Classification of Functionality, Disability and Health.

“…Comparing HRQoL measures with the ICF may reveal its uniqueness, demonstrating the nature and scope of its content. In most cases, instruments focus on different aspects of ICF domains, with "body functions" and "activities and participation" components usually predominating (7,8). In the 4 versions presented here (CFQ parents6-13 ; CFQ 6-11 ; DISABKIDS self ; and DISABKIDS proxy ), the categories primarily represented body functions, except for the CFQ 6-11 , version, where the activities and participation component was the most frequent.…”

“…Because of the clinical manifestations present in the scope of body functions resulting from the multisystemic nature of CF, the questionnaires can be used to address a large number of aspects related to this domain (7,8,19). Studies that seek to identify clinical factors associated with HRQoL in individuals with CF have concluded that variables assessing exacerbation and pulmonary function have the greatest impact on HRQoL (4,20,21).…”

“…The HRQoL indicator provides information on the impact of a disease and its treatment in different life situa tions, which are measured by specific or generic questionnaires aimed at assessing the individual in terms of physical, emotional and social impacts. However, these instruments may focus differently on the components of functionality and health, and analysing their scope could result in better clinical practice applications (7,8).…”

“…In recent years, numerous studies on the breadth of HRQoL instruments have proposed using the International Classification of Functioning Disability and Health (ICF) to provide relevant information on how they can be used in the assessment, planning and care of children with CF (7)(8)(9)(10). This is because the ICF is used to monitor the functionality of individuals and populations on a broader scale in order to consider the health and biopsychosocial aspects involved in the health-disease process.…”

“…The common content between ICF and generic instruments that evaluate HRQoL in children has already been identified (7,8), but the points of convergence and/ or divergence between questionnaires in order to assess the biopsychosocial impacts of CF and ICF have yet to be established. As such, the objectives of this study were to identify the main HRQoL questionnaires specifically designed for children with CF and to examine how their content is represented in the ICF categories.…”