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This volume's purpose is to describe concepts and methods concerning assessment of health-related quality of life (HRQOL) in children and adolescents with a special focus on chronic health conditions. The impetus for this book came from a recognition of the increasing importance of HRQOL assessments in the evaluation of treatment outcomes and the need to increase the utilization of HRQOL assessments in research and clinical applications with a range of pediatric populations. The need to develop a volume that describes new research and clinical applications concerning this topic stemmed from several recent developments. There is a continuing need for evaluations of the efficacy of medical treatments for children and adolescents, including those with chronic health conditions.
To address these critical unmet needs in the field of HRQOL assessment, and to advance scientific methods and clinical applications in this field, a conference was held at Case Western Reserve University. The conference set out to summarize current information concerning the development and implementation of measures of HRQOL assessment, to identify and consider key conceptual and methodological issues in research concerning the measurement of HRQOL, and to recommend priorities to advance the state-of-the-art in research and clinical applications of QOL assessment in children and adolescents with chronic health conditions. This volume summarizes and synthesizes the information that was presented by the conference participants in a series of lively discussions and chapters that were based on the presentations.
Contents: Preface. Part I: Historical Evolution and Conceptual Foundations of Pediatric Health-Related Quality of Life Assessment. R. Levi, D. Drotar, Critical Issues and Needs in Health-Related Quality of Life Assessment of Children and Adolescents With Chronic Health Conditions. E.L. Schor, Children's Health and the Assessment of Health-Related Quality of Life. J.W. Finkelstein, Methods, Models, and Measures of Health-Related Quality of Life for Children and Adolescents. J.D. Lantos, Some Moral and Political Pitfalls in Measuring Quality of Life. Part II: Population-Based Applications of Measures of Health-Related Quality of Life With Children and Adolescents. R.M. Kaplan, Implications of Quality of Life Assessment in Public Policy for Adolescent Health. B. Starfield, A. Riley, Profiling Health and Illness in Children and Adolescents. J.M. Landgraf, L. Abetz, Influences of Sociodemographic Characteristics on Parental Reports of Children's Physical and Psychosocial Well-Being: Early Experiences With the Child Health Questionnaire. Part III: Methods, Measures, and Applications of Health-Related Quality of Life Assessment in Children and Adolescents With Specific Chronic and Health Conditions. A.M. Jacobson, K. Fried, Conceptual Issues in Developing Quality of Life Assessments for Children: Illustrations From Studies of Insulin-Dependent Diabetes Mellitus. S. Saigal, P. Rosenbaum, L. Hoult, W. Furlong, D. Feeny, E. Burrows, B. Stoskopf, Conceptual and Methodological Issues in Assessing Health-Related Quality of Life in Children and Adolescents: Illustration From Studies of Extremely Low Birthweight Survivors. D. Feeny, E.F. Juniper, P.J. Ferrie, L.E. Griffith, G.H. Guyatt, Why Not Just Ask the Kids? Health-Related Quality of Life in Children With Asthma. S.R. Boggs, P. Durning, The Pediatric Oncology Quality of Life Scale: Development and Validation of a Disease-Specific Quality of Life Measure. D.I. Czyzewski, L.K. Bartholomew, Quality of Life Outcomes in Children and Adolescents With Cystic Fibrosis. S.L. Gortmaker, W.R. Lenderking, C. Clark, S. Lee, M.G. Fowler, J.M. Oleske, the ACTG 219 Team, Development and Use of a Pediatric Quality of Life Questionnaire in AIDS Clinical Trials: Reliability and Validity of the General Health Assessment for Children. L.S. Walker, C.A. Heflinger, Quality of Life Predictors of Outcome in Pediatric Abdominal Pain Patients: Findings at Initial Assessment and 5-Year Follow-Up. Part IV: Methods, Measures, and Applications of HRQOL Assessment in Children With Growth and Endocrine Problems. I. Wiklund, A. Erling, K. Albertsson-Wikland, Critical Review of Measurement Issues in Quality of Life Assessment for Children With Growth Problems. B. Stabler, N.C. Frank, Quality of Life and the Psychiatric Status of Individuals Treated With GH in Childhood. D.E. Sandberg, P. Michael, Psychosocial Stresses Related to Short Stature: Does Their Presence Imply Psychological Dysfunction? D.H. Skuse, S. Cave, A. O'Herlihy, R. South, Quality of Life in Children With Turner Syndrome: Parent, Teacher, and Individual Perspectives. Part V: Summary of Recommendations for Clinical Research Applications of Assessments of Pediatric Health-Related Quality of Life. D. Drotar, R. Levi, T.M. Palermo, K.A. Riekert, J.R. Robinson, N. Walders, Clinical Applications of Health-Related Quality of Life Assessment for Children and Adolescents. D. Drotar, R. Levi, T.M. Palermo, K.A. Riekert, J.R. Robinson, N. Walders, Recommendations for Research Concerning the Measurement of Pediatric Health-Related Quality of Life.