Health Status and Quality of Life
Chronic health conditions that affect children represent an important and prevalent public health problem (Newacheck & Taylor, 1992) that can disrupt children’s functioning and activities (Newacheck & Halfon, 1998) and increase family burden (Drotar, 1997). In recent years, advances in medical treatment have prolonged the lives of children with conditions such as cancer and very low birth weight and have necessitated increased attention to the assessment of their functioning and adaptation. Studies of the long-term outcomes of children with chronic health conditions place a primary emphasis on assessment of functioning (Thompson & Gustafson, 1996). As interventions are developed to enhance the functioning and adaptation of children with chronic illness, reliable and valid measures of functional outcome become increasingly important (Bauman, Drotar, Perrin, Pless, & Leventhal, 1997). For all the aforementioned reasons, the measurement of children’s health status and quality of life has assumed increased importance (Spieth & Harris, 1996).
Health status refers to a description of the child’s overall level of health that includes the severity of the illness. Quality of life (QOL) refers to functional effect of an illness as perceived by the child or others who are knowledgeable about the child, such as caretakers (Spilker, 1990). One advantage of the construct of QOL is the fact that it is comprehensive and measures well-being in multiple domains such as physical, mental, and social (WHO, 1948).
Health status and QOL assessments have several important applications. One of these is the ability to provide a comprehensive description of children’s health status, which can have multiple purposes. For example, assessments can provide descriptive information on current health status, comparison of patients at different disease stages, evaluation of the efficacy of different treatment protocols, and assessment of the child’s progress over time in response to medical treatment.
A second application is the identification of acute dysfunctions, chronic dysfunctions, or both following an illness or treatment. This is an emerging problem among long-term survivors of illnesses such as cancer, and individuals who are at risk for the development of psychological difficulties (Eiser, 1995; Mulhern et al., 1989). QOL assessment can be used to identify children with a chronic illness who may be at risk for developing future psychological, physical difficulties, chronic symptoms, or all of the aforementioned.
A third application of measures of health status and QOL is the evaluation of treatment efficacy and clinical decision making. Traditionally, health outcome indicators have included information on mortality, morbidity, hospital re-admission, re-treatment rates, the results of laboratory and other diagnostic tests, complications, or all of the above (Bowling, 1995). Furthermore, assessments of QOL that are potentially sensitive to morbidity associated with alternative treatments are necessary to document the costs versus benefits of available treatments (Eiser, 1995). By providing information about patients’ subjective experience and morbidity associated with different treatments, QOL measures can also facilitate the clinical decision making in deciding between alternative treatments. Finally, measures of health status and QOL describe the substantial variations in response to treatment and long-term prognosis within populations of children with chronic illnesses.
Research is needed to develop and support the various applications of health status and QOL assessments in children and adolescents. In particular, research is needed to document the utility and validity of measures of health status and QOL in clinical decision making, that is, to answer questions such as: How can practitioners utilize assessments of health status and QOL in making treatment-related decisions and assessments? How do health status and QOL measures improve efficiency of assessment and clinical decision making?
Another area of needed research concerning clinical application involves the use of health status and QOL measures to evaluate the impact of managed care and health services on children’s health and well-being. Measures of health status and QOL have the potential to provide valuable data that can be utilized to evaluate the impact of comprehensive health care for children with chronic health conditions.
Over and beyond research related to clinical applications of measures of health status and QOL, more basic research questions need to be addressed (Drotar, 1998). Developmental research has underscored significant differences in how children of different ages appraise their health (Tinsley, 1992). Research is needed to document the impact of developmental differences in children’s perceptions of their health status and QOL across various ages. Research is also needed to document changes in perceptions of health status and QOL that occur in response to specific developmental stages (e.g., adolescence). Studies that describe differences in the perceptions of health status and QOL among children, adolescents, and parents from different cultural groups and families from different economic levels and structure would be highly desirable. Because it is not always possible to obtain reports from parent and child, research is needed to identify domains of health status and QOL for which a parent’s proxy report is sufficient versus those for which a child’s report supplies unique information. Other unanswered questions concerning informants’ reports that should be addressed in future research concern the differential validity of child versus parent reports of health status of QOL for various research questions and outcomes. Finally, the clinical significance and validity of discrepancies in parents’ versus children’s perceptions of health status and QOL should be described (Drotar, 1998).
In order to address these potential clinical applications and research questions, researchers and practitioners who are interested in measurement of health status and QOL require access to these constructs. Such access is especially important because many of the measures of health status and QOL are relatively new. The authors of this volume provided an important service to potential users of these instruments by summarizing information concerning available measures of health status and QOL in a succinct, user-friendly format.
Bauman, L.J., Drotar, D., Perrin, E., Pless, F.B., & Leventhal, J. (1997). A review of the effects of psychosocial interventions for children with chronic health conditions. Pediatrics, 100, 244–251.
Bowling, A. (1995). Measuring disease: A review of disease-specific quality of life measurement scales. Philadelphia: Open University Press.
Drotar, D. (1997). Intervention research: Pushing back the frontiers of pediatric psychology. Journal of Pediatric Psychology, 22, 593–606.
Drotar, D. (Ed.). (1998). Measuring health related quality of life in children and adolescents: Implications for research and practice. Mahwah, NJ: Lawrence Erlbaum Associates.
Eiser, C. (1995). Choices in measuring quality of life in children with cancer: A comment. Psychooncology, 4, 121–131.
Mulhern, R.K., Ho...