Working with children to develop dimensions for a preference based generic paediatric health related quality of life measure

The use of preference based measures (PBM) of health related quality of life (HRQoL) in National Health Service (NHS) decision making is becoming more common. PBMs allow the calculation of quality adjusted life years which can then be used in economic evaluation as part of the decision making process. Research in the field of paediatric PBMs is lacking. This work is the first stage in the development of a generic paediatric PBM of HRQoL for use in economic evaluation.

To identify the dimensions of HRQoL for inclusion in the instrument, 74 qualitative interviews were carried out with children aged 7-11 years, to find out how their health affects their lives. The children were divided into two age groups (7-9 years and 9-11 years). Each age group was sampled and analysed independently to explore whether these age groups have a common HRQoL framework. Sampling was purposive, trying to balance primarily for level of health within age, with gender and ethnicity as secondary criteria. A wide range of health conditions, both acute and chronic were covered in the interviews and children were successfully able to articulate how their health affects their lives.

Thematic content analysis of the data identified ten dimensions of HRQoL relevant to each population, nine of which were the same in each group, giving 11 dimensions in total for the combined group. The dimensions cover social, emotional and physical aspects of HRQoL in common with other frequently used generic paediatric HRQoL measures, but differ in terms of including dimensions on sleep, feeling jealous and feeling tired/weak and not including dimensions related to treatment/procedures and wider family or behavioural issues.