Working With Children to Develop Dimensions for a Preference-Based, Generic, Pediatric, Health-Related Quality-of-Life Measure
Tóm tắt
Use of preference-based measures (PBM) of health-related quality of life (HRQoL) is increasing. PBMs allow the calculation of quality-adjusted life years, which can be used in decision making. Research in the field of pediatric PBMs is lacking. This work is the first stage in the development of a new generic, pediatric PBM of HRQoL. Seventy-four qualitative interviews were undertaken with children to find out how health affects their lives. Sampling was purposive, balancing primarily for health within age, with gender and ethnicity as secondary criteria. Interviews covered a wide range of health conditions, and children were successfully able to articulate how their health affected their lives. Eleven dimensions of HRQoL were identified, covering social, emotional, and physical aspects, in common with other generic pediatric HRQoL measures, but differ by including feeling jeal'ous and feeling tired/weak and not including dimensions related to parental, family, or behavioral issues.
Từ khóa
Tài liệu tham khảo
Brazier, J., 2007, Measuring and valuing health benefits for economic evaluation
Department for Children, Schools and Families., 1995, Every child matters
Department for Children, Schools and Families., 2006, Pupil level annual school census
Drummond, M.F., 1997, Methods for the economic evaluation of health care programmes, 2
Food and Drug Administration, U.S. Department of Health and Human Services., 2006, Guidance for Industry, Patient-Reported Outcome Measures: Use in Medical Product Development to Support Labeling Claims. Draft Guidance
Landgraf, J.M. ( 2005). Practical considerations in the measurement of HRQoL in child/adolescent clinical trials. In P. Fayers & R. Hays (Eds.), Assessing quality of life in clinical trials (2nd ed., pp. 339-367). New York: Oxford University Press.
McCabe, C. ( 2003). Estimating preference weights for pediatric health state classification (HUI2) and a comparison of methods. Doctoral thesis. The University of Sheffield, Sheffield, United Kingdom.
McColl, E. ( 2005). Developing questionnaires. In P. Fayers & R. Hays (Eds.), Assessing quality of life in clinical trials (2nd ed., pp. 9-23). New York: Oxford University Press.
National Institute for Health and Clinical Excellence., 2004, Guide to the methods of technology appraisal
National Statistics., 2007, Department for children, schools and families
QSR International Pty Ltd., 2007, NVivo qualitative data analysis software, (Version 7) [Computer software]
Ritchie, L., 2005, Qualitative research practice: A guide for social science students and researchers
United Nations., 2007, Convention on the rights of the child
World Health Organization., 1948, Constitution of the World Health Organization. Basic documents