A Short Progressive Supranuclear Palsy Quality of Life Scale

Jensen I, Stiel S, Bebermeier S, Schrag A, Greten S, Doll-Lee J, Wegner F, Ye L, Heine J, Krey L, Höllerhage M, Süß P, Winkler J, Berg D, Paschen S, Tönges L, Gruber D, Gandor F, Jost WH, Kühn AA, Claus I, Warnecke T, Pedrosa DJ, Eggers C, Trenkwalder C, Classen J, Schwarz J, Pötter-Nerger M, Kassubek J, Schnitzler A, Höglinger GU, Klietz M (2024)

Publication Language: English

Publication Type: Journal article

Publication year: 2024

Journal

Book Volume: 39

Pages Range: 1602-1609

Journal Issue: 9

DOI: 10.1002/mds.29936

Abstract

Objective: The Progressive Supranuclear Palsy quality of life scale (PSP-QoL) has been shown to be a useful tool for capturing health-related quality of life of patients in “everyday life” and in progressive supranuclear palsy (PSP) research. However, at 45 items in length, the questionnaire can take a long time, exhausting PSP patients, in particular if cognitive impaired, which can have a negative impact on the assessment. The aim of this study was to establish a condensed version of the PSP-QoL for research and routine clinical care. Methods: In this retrospective study, data originating from a German cohort of PSP patients was analyzed. Data from 245 PSP patients were included in this study. The short PSP-QoL questionnaire was created using a two-factor solution and item-total and inter-item correlations for mental and physical aspects of daily living of the PSP-QoL followed by confirmatory factor analysis. Results: The final scale included 12 items representing mental (five items) and physical symptoms (seven items). The specified two-factor model displayed an excellent fit in the confirmatory factor analysis. The short Progressive Supranuclear Palsy Quality of Life scale (PSP-ShoQoL) correlated moderately with the PSP Rating Scale (r [243] = 0.514, P < 0.001) and Geriatric depression scale (r [231] = 0.548, P < 0.001). Sensitivity to change confirmed a significant decrease in QoL after 12 months. Discussion: In this study, we created a 12-item PSP-ShoQoL designed to “facilitate” daily clinical work that correlated strongly with the PSP-QoL and was sensitive to change. © 2024 The Author(s). Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.

Authors with CRIS profile

Involved external institutions

Klinikum Osnabrück Germany (DE) Universitätsklinikum Gießen und Marburg (UKGM) Germany (DE) Knappschaftskrankenhaus Bottrop Germany (DE) Medizinische Hochschule Hannover (MHH) / Hannover Medical School Germany (DE) Universität Ulm Germany (DE) Heinrich-Heine-Universität Düsseldorf Germany (DE) Klinikum der Universität München Germany (DE) Christian-Albrechts-Universität zu Kiel Germany (DE) Katholisches Klinikum Bochum (St. Josef- und St. Elisabeth-Hospital gGmbH) Germany (DE) Neurologisches Fachkrankenhaus für Bewegungsstörungen / Parkinson Germany (DE) Parkinson-Klinik Ortenau Germany (DE) Charité - Universitätsmedizin Berlin Germany (DE) Universitätsklinikum Münster Germany (DE) Gottfried Wilhelm Leibniz Universität Hannover Germany (DE) University College London (UCL) United Kingdom (GB) Paracelsus-Elena-Klinik Kassel Germany (DE) Universität Leipzig Germany (DE) InnKlinikum Haag Germany (DE) Universitätsklinikum Hamburg-Eppendorf (UKE) Germany (DE)

How to cite

APA:

Jensen, I., Stiel, S., Bebermeier, S., Schrag, A., Greten, S., Doll-Lee, J.,... Klietz, M. (2024). A Short Progressive Supranuclear Palsy Quality of Life Scale. Movement Disorders, 39(9), 1602-1609. https://doi.org/10.1002/mds.29936

MLA:

Jensen, Ida, et al. "A Short Progressive Supranuclear Palsy Quality of Life Scale." Movement Disorders 39.9 (2024): 1602-1609.

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