Measuring Health-Related Quality of Life in Children and Adolescents: Implications for Research and Practice

By Dennis Drotar | Go to book overview

strategy for obtaining information for patient management and the evaluation of clinical interventions in pediatric settings. By independently asking children about the emotional burdens, activity limitations, and side effects of medications, experience that is both relevant and important to children with asthma is more likely to be revealed. Such information is important for clinical management for understanding of burdens of morbidity associated with pediatric asthma and for evaluating alternative interventions designed to reduce those burdens (see also Erling et al., 1994).

We purposefully challenged respondents with an array of demanding tasks, in part to determine how reliability and burden would vary by age or other characteristics, and tentatively discovered that some instruments are perhaps not suitable at younger ages. Nonetheless disease-specific and generic measures worked well on patients as young as 7. By age eight, such children seemed to be quite capable of completing a rather comprehensive battery of measures including direct preference measurement using the feeling thermometer.

Further assessment of the reliability of direct preference measurement approaches--both the feeling thermometer and the standard gamble--in children is an important item for the research agenda. In addition, additional work on methods for assessing HRQOL among children younger than 7 is needed. There are a dearth of measures appropriate for children in the 3 to 5 and the 5 to 8 age range. A related objective would be the creation of a linked series of measures that are developmentally appropriate for various age ranges with overlapping content. Such series of measures would facilitate longitudinal investigations.

In summary, there are compelling reasons to ask the kids. Children provide important information on their health status and HRQOL, information that is, in general, not readily available from standard clinical measures or by asking the parents. In describing the degree of morbidity and in assessing the effectiveness of health and health-care interventions, it is therefore important to obtain information directly and independently from the children themselves.


REFERENCES

Barr, R. D., Feeny, D., Furlong, W., Weitzman, S., & Torrance, G. W. ( 1995). A preference-based approach to health-related quality of life in children with cancer. International Journal of Pediatric Hematology/Oncology, 2, 305-315.

Barr, R. D., Furlong, W., Dawson, S., Whitton, A. C., Strautmants, I., Pai, M., Feeny, D. , & Torrance, G. W. ( 1993). "An assessment of global health status in survivors of acute lymphoblastic leukemia in childhood". American Journal of Pediatric Hematology/Oncology, 15, 284-290.

Barr, R. D., Pai, M., Weitzman, S., Feeny, D., Furlong, W., Rosenbaum, P., & Torrance, G. W. ( 1994). "A multi-attribute approach to health status measurement and clinical management--illustrated by an application to brain tumors in childhood"

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