title: Measuring health-related quality of life in patients with progressive supranuclear palsy.
abstract: 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.
authors.affiliation: 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
authors.forename: A
authors.initials: A
authors.lastname: Schrag
authors.forename: C
authors.initials: C
authors.lastname: Selai
authors.forename: N
authors.initials: N
authors.lastname: Quinn
authors.forename: J
authors.initials: J
authors.lastname: Hobart
mesh_terms: D000368:Aged; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D017063:Outcome Assessment, Health Care; D011594:Psychometrics / Q000379:methods*; D011788:Quality of Life; D015203:Reproducibility of Results; D018434:Sickness Impact Profile; D013494:Supranuclear Palsy, Progressive / Q000503:physiopathology / Q000523:psychology*; D011795:Surveys and Questionnaires