Paralysis Research Today is a free monthly online journal that collates and summarizes the latest research about Paralysis, including details on treatment, diagnosis, facial paralysis, sleep paralysis.

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

Schrag A, Selai C, Quinn N, Hobart J

University Department of Clinical Neurosciences, Royal Free and University College Medical School, Sobell Department of Motor Neuroscience and Movement Disorders, London, UK. a. schragg@medsch.ucl.ac.uk

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.

Published 11 August 2005 in Neurocase, 11(4): 246-9.
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