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

By Dennis Drotar | Go to book overview

children to comprehend the tasks involved in the measurement of HRQOL. Further studies of a similar nature should be undertaken to gain more insight into the perspectives and preferences of children.

However, there is a real concern on the part of interested parties such as parents and health professionals about whether the subjective ratings of HRQOL obtained from children/parents may be inappropriately used to influence health policy ( Harrison, 1996; Saigal et al., 1996b). This uneasiness is perhaps related to the general reluctance on the part of professional groups and parent advocates to accept patients' subjective values without additional measures, such as assessment by health professionals ( McCormick, 1996: Harrison, 1996). A more valid concern, however, is that as yet we do not have clear knowledge of the processes by which patients arrive at these judgments nor the predictive validity of this approach for children. Such information may require additional qualitative studies to understand how respondents make choices, as well as longitudinal studies to determine the stability of their responses.

A number of challenges therefore remain to be considered in this innovative and exciting field before these technologies are incorporated in making decisions regarding distribution of scarce public resources. Such inquiries are likely to be particularly rewarding if they are conducted as collaborative efforts at a national and international level among investigators interested in the field of HRQOL.


ACKNOWLEDGMENTS

We would like to thank Drs. George Torrance, Ronald Barr, and David Streiner for their ongoing advice and support, and Dr. Dennis Drotar for his constructive comments. We are indebted to the parents of premature and control children for participating in our studies over a period of several years. We appreciate the support of the Department of Pediatrics, Children's Hospital at Hamilton Health Sciences Corporation and the Department of Clinical Epidemiology and Biostatistics at the Centre for Health Economics and Policy Analysis.

Supported by grants from the Hospital for Sick Children Foundation XG92-043 and Ontario Ministry of Health # 04447.


REFERENCES

Barr, J. T., & Mongiello, A. E. ( 1996). "Do daughters and mothers differ in their valuation of health states?" Medical Decision Making, 16, 470.

Barr, R. D., Furlong, W., Dawson, S., Whitton, A. C., Strautman, Pai M., Feeny, D., & Torrance, G. W. ( 1994a). "An assessment of global health status in survivors of acute lymphoblastic leukemia in childhood". American Journal of Pediatric Hematology & Oncology, 15, 284-290.

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