Assessment of health-related quality of life after bone cancer in young people: easier said than done.

BACKGROUND: Improved survival rates coupled with awareness of physical and psychological late-effects have resulted in calls to consider the health-related quality of life (HRQOL) of survivors of childhood cancer. Survivors of bone tumours (osteosarcoma and Ewing's sarcoma) may be more vulnerable to compromised HRQOL than survivors of other cancers given their poor physical functioning.
METHOD: Current research is reviewed in relation to (i) HRQOL following a bone tumour compared with the healthy population and other child cancers and (ii) between those treated by amputation or limb salvage.
RESULTS: Limitations of current research include (i) measurement of HRQOL; (ii) reliance on single informants, usually mothers and (iii) research design. In the process of adjustment to disease, patients reassess the meaning, value and importance of different domains, so that decisions about HRQOL are based on changing standards over time. These 'response shifts' challenge the validity of both cross-sectional and longitudinal research designs.
CONCLUSIONS: We conclude that methodological difficulties underlying previous work account for some of the discrepancies apparent in the current literature and challenge understanding of the complex processes of adjustment following a bone tumour.