METHODS, MEASURES, AND APPLICATION OF HRQOL ASSESSMENT IN CHILDREN WITH GROWTH AND ENDOCRINE PROBLEMS
The advances in medical technology that have enabled children with chronic conditions to live longer lives have also influenced changes in the utilization of treatments available for children with growth and endocrine problems. For example, in the past, only children with demonstrable growth hormone deficiency (GHD) received growth hormone (GH) treatment. The advent of bioengineered growth hormone has led to a dramatic increase in the number of children with short stature who are treated with GH. Some research on the psychosocial outcomes and adaptation of children with short stature has suggested that treatment is warranted in part because these children experience social problems, social isolation, negative self-concepts, and adjustment difficulties. Whereas the medical management of children with growth problems is often influenced, at least in part, by concerns about the psychosocial impact of being short on children's lives, the evaluation of the effects of treatment has been based on objective measures such as height, weight, or bone diameter, which do not consider the child or parents' perceptions of their quality of life (QOL). Consequently, the information obtained from HRQOL assessments of children with growth problems has considerable utility in making treatment decisions and in tracking the well-being of children treated with growth hormone. Several of the chapters in this section describe the uses and challenges involved in using HRQOL assessments of children with growth and endocrine problems.
In chapter 15, Wiklund and her colleagues describe factors relevant to the measurement of HRQOL in children and adolescents with growth problems, such as the influence of gender and age, and the impact of denial. This chapter evaluates the advantages and disadvantages of the methods, measures, and domains that are incorporated in assessments of the HRQOL of children with short stature, reviews current methods used to evaluate the effectiveness of GH therapy, and offers suggestions to maximize the utility of information about children's QOL in monitoring the consequences and efficacy of GH therapy for children with growth problems and improve the quality of research with this population.
Stabler and Frank (chapter 16) continue the discussion of the application of HRQOL concepts and measures in children treated with GH therapy. Their review of empirical studies regarding the psychosocial