of debilitation found in pediatric conditions such as CF. This sample's health status, as measured by distribution of NIH scores, was typical for a pediatric sample. Moreover, the level of QWB reported for this sample was consistent with one previous study that used the QWB to assess cancer patients ( Bradlyn, Harris, Warner, Ritchey, & Zaboy, 1993). However, it is important to note these QWB scores were higher than the QWB scores used in the adults with chronic conditions ( Atkins et al., 1984; Kaplan et al., 1987). Therefore, a ceiling effect could have attenuated the relationships between the QWB and more specific health variables. Further, prior studies have found the highest correlations between the QWB and medical and attitudinal measures that varied from day to day. In contrast, stable measures such as general health, developmental trends, and stable family functioning were the major outcomes employed in this study.
Perhaps the most important information gathered in this study is the apparent low adaptive behavior of this sample. Adolescents in the sample were found to perform below age expectation on communication. Similar trends were seen in socialization and daily living skins. It may be speculated that some combination of illness restriction, lack of experience, and lowered expectations resulted in below-average adaptive behavior. These data also indicated that although parents are negatively impacted by the child's health status and the behavior problems, they were not seriously affected by the children's' adaptive functioning. However, as children with chronic illness, especially severe chronic illness such as CF, live into adulthood, their compromised ability to function could affect their ability as independent adults and will likely become important to their families' as well as their own QOL.
These data suggest that QOL in children and adolescents with chronic medical conditions, such as CF, should not be seen as a unitary dimension. For this reason, multiple dimensions of the concept, including health measures, psychological and adaptive functioning, and family functioning are important to characterize the population as well as to plan and evaluate interventions.
The project described in this chapter was funded by the National Heart, Lung, and Blood Institute of the National Institutes of Health, Grant HL38339.
Abidin, R. R, ( 1983). Parenting stress index manual. Charlottesville, VA: Pediatric Psychology Press.