METHODS, MEASURES, AND APPLICATIONS OF HEALTH-RELATED QUALITY OF LIFE ASSESSMENT IN CHILDREN AND ADOLESCENTS WITH SPECIFIC CHRONIC HEALTH CONDITIONS
This section deals with applications of measures of health-related quality of life (HRQOL) for children and adolescents with a range of chronic conditions including life-threatening problems. In the first chapter in this section, using children with insulin-dependent diabetes mellitus (IDDM) as a model, Jacobson and Fried provide an overview of salient conceptual issues to be considered in the development of HRQOL measures for children and adolescents. Several crucial questions are raised and addressed in this chapter: Are domains of adult HRQOL measures appropriate to use with children? Are parents, physicians, or the children themselves the most appropriate reporters of the child's quality of life? How does a child's illness affect the family? How can this impact be measured? Jacobson and Fried's description of these issues provides a useful context in which to consider the other chapters in this section.
In chapter 9, Saigal and her colleagues give readers a comprehensive background on parent versus child perspectives regarding the HRQOL of teenagers who were born with extremely low birth weights. This chapter discusses the concerns that have been raised regarding the validity and relevance of children's self reports of HRQOL, and presents data that have implications for the validity of these reports. Findings indicated that teenagers can classify their own health status reliably as measured against their parents' assessments. In addition, they were able to use preference measurement techniques to make independent assessments about their own QOL.
Feeny and his colleagues (chapter 10) address several critical issues in the HRQOL assessment including performance characteristics of these measures including acceptability, burden, reliability, responsiveness, validity, interpretability, and usefulness. These authors present data concerning the application of a disease-specific measure: The Pediatric Asthma Quality of Life Questionnaire, generic multiattribute systems, and direct utility measures of HRQOL. Results provide evidence that children as young as seven years of age can reliably complete interview-based, disease-specific, and generic measures of HRQOL. Findings indicate that asking children directly and independently about their HRQOL provides a strategy to evaluate clinical interventions.