Measuring health-related quality of life in patients with progressive supranuclear palsy

The development of psychometrically sound health- related quality of life ( Hr- QoL) instruments has made it possible to assess subjectively experienced Hr- QoL quantitatively, and to incorporate Hr- QoL as a measure in medical research and clinical trials. Hr- QoL in patients with progressive supranuclear palsy ( PSP) has been measured using generic ( not disease- specific) instruments, or Parkinson's disease- specific scales. We give an overview of the development of a disease- specific Hr- QoL instrument for patients with PSP. Based on interviews with 27 patients with PSP a preliminary Hr- QoL instrument was developed and administered to over 300 people with PSP in the UK and US. Following psychometric analysis a rating scale with a physical and a mental subscale emerged. In this patient sample, both subscales satisfied criteria for scaling assumptions, acceptability, reliability and validity ( correlations with other measures consistent with a priori hypotheses). The psychometric properties of this questionnaire are undergoing further evaluation.