SUMMARY OF RECOMMENDATIONS FOR CLINICAL RESEARCH APPLICATIONS OF ASSESSMENTS OF PEDIATRIC HEALTH-RELATED QUALITY OF LIFE
One of the neglected aspects of health-related quality of life (HRQOL) assessment in children and adolescents concerns clinical applications. Conference participants and chapter authors envisioned the following categories of clinical applications of HRQOL measures that are summarized in chapter 19: (a) health surveillance and screening for broad populations of children and adolescents; (b) needs assessment and treatment planning for children and adolescents with chronic health conditions; (c) monitoring children's health status over the course of treatment for chronic conditions; and (d) assessing the experiences of children and families with health care. Barriers to such clinical application included the need to demonstrate feasibility and validity, practitioners' lack of familiarity with measures of HRQOL, and their potential contributions to treatment planning and evaluation. Conference participants contributed several useful recommendations to enhance clinical applications of HRQOL assessment in a range of settings such as documentation of the feasibility, acceptability, utility of clinical applications of HRQOL assessments, communication of information concerning HRQOL assessments to children and families, and disseminating information about the utility of assessments of HRQOL to hospital administrators, practitioners, and consumers.
The final chapter summarizes chapter authors' and conference participants' recommendations concerning the next steps that are needed to extend scientific knowledge of HRQOL assessment for pediatric populations. Recommendations focused on using measures of HRQOL in three major areas: (a) evaluating the outcomes of controlled clinical trials of drug treatments and/or behavioral and psychological treatments for children and adolescents with chronic health conditions; (b) evaluating clinical applications (e.g., sensitivity and specifically utility and validity in clinical decision-making), evaluating the impact of managed care; and (c) studies of critical issues in the measurement of HRQOL, for example, comparisons of disease versus generic measures, the impact of developmental, cultural, and family issues of measurement on the HRQOL, utility of data from multiple informants, and development of qualitative measures. Conference participants identified the need for funding agencies to