Developing a descriptive system for a new preference-based measure of health-related quality of life for children

The use of preference-based measures (PBMs) of health-related quality of life (HRQoL) is increasing in health care resource allocation decisions. Whilst there are measures widely used for this purpose in adults, research in the paediatric field is more limited. This paper reports on how the descriptive system for a new paediatric generic PBM of HRQoL was developed from dimensions identified in previous research. Existing scales from the paediatric literature were reviewed for suitability, and scales were also developed empirically, based on qualitative interview data from children, by taking adverbial phrases and confirming the ordinality by a ranking exercise with children. The resulting scales were applied to the dimensions from the previous research. No suitable scales were found in the paediatric literature, so the empirically derived scales were used resulting in seven different types. Children were successfully able to rank these to determine the ordinality, and these types were applied to the dimensions. This work has empirically developed a descriptive system for the dimensions of HRQoL identified in previous research. Further research is needed to test the descriptive system on a paediatric population and reduce the number of dimensions to be amenable to health state valuation.