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NEUROLOGY 2006;67:39-44
© 2006 American Academy of Neurology

Measuring quality of life in PSP

The PSP-QoL

A. Schrag, MD, PhD, C. Selai, PhD, N. Quinn, MD, A. Lees, MD, I. Litvan, MD, A. Lang, MD, Y. Poon, RN, J. Bower, MD, D. Burn, MD and J. Hobart, PhD

From Royal Free and University College Medical School, Department of Clinical Neurosciences (A.S.), and Institute of Neurology (A.S., C.S., N.Q., A.L., J.H.), University College London, UK; Movement Disorder Program (I.L.), Department of Neurology, University of Louisville, KY; Toronto Western Hospital (A.L., Y.P.), Ontario, Canada; Department of Neurology (J.B.), Mayo Clinic College of Medicine, Rochester, MN; Department of Neurology (D.B.), Regional Neuroscience Centre, Newcastle General Hospital, UK; and Department of Clinical Neuroscience (J.H.), Peninsula Medical School, Plymouth, UK.

Address correspondence and reprint requests to Dr. Anette Schrag, Royal Free and University College Medical School, Department of Clinical Neurosciences, Rowland Hill Street, London NW3 2PF UK; e-mail: a.schrag{at}medsch.ucl.ac.uk

Objective: To develop a new patient-reported outcome measure for progressive supranuclear palsy (PSP) and to test its psychometric properties.

Methods: First, the authors generated a pool of potential scale items from in-depth patient interviews. Second, the authors administered these items, in the form of a questionnaire, to a sample of people with PSP and traditional psychometric methods were used to develop a rating scale satisfying standard criteria for reliability and validity. Third, the authors examined the psychometric properties of the rating scale in a second sample.

Results: In stage 1, a pool of 87 items was generated from 27 patient interviews. In stage 2, a scale with two subscales (physical, 22 items; mental, 23 items), satisfying standard criteria for reliability and validity, was developed from the response data of 225 patients with PSP. In stage 3, the scale was examined in 188 people with PSP. Missing data were low, scores in both subscales were evenly distributed, floor and ceiling effects were small. Reliability was high (Cronbach’s alpha 0.93, 0.95; test-retest 0.95, 0.92). Validity was supported by the interscale intercorrelation (0.60), factor analysis, and the magnitude and pattern of correlations with four other rating scales, disease severity, and disease duration. The psychometric properties of the new scale were similar in the United Kingdom and North America, and in clinic- and community-based samples studied.

Conclusions: The Progressive Supranuclear Palsy Quality of Life scale (PSP-QoL) may be a helpful patient-reported scale for clinical trials and studies in PSP.

Additional material related to this article can be found on the Neurology Web site. Go to www.neurology.org and scroll down the Table of Contents for the July 11 issue to find the title link for this article.

Supported by the Society for Progressive Supranuclear Palsy and The Progressive Supranuclear Palsy (PSP Europe) Association.

Disclosure: The authors report no conflicts of interest.

Received December 28, 2005. Accepted in final form March 20, 2006.




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