A Short Progressive Supranuclear Palsy Quality of Life Scale

authored by: Ida Jensen, Stephanie Stiel, Sarah Bebermeier, Anette Schrag, Stephan Greten, Johanna Doll-Lee, Florian Wegner, Lan Ye, Johanne Heine, Lea Krey, Matthias Höllerhage, S. Patrick, Jürgen Winkler, Daniela Berg, Steffen Paschen, Lars Tönges, Doreen Gruber, Florin Gandor, Wolfgang H. Jost, Andrea A. Kühn, Inga Claus, Tobias Warnecke, David J. Pedrosa, Carsten Eggers, Claudia Trenkwalder, Joseph Classen, Johannes Schwarz, Monika Pötter-Nerger, Jan Kassubek, Alfons Schnitzler, Günter U. Höglinger, Martin Klietz
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.
Organisation(s): Institute of Psychology
External Organisation(s): Hannover Medical School (MHH)
Ludwig-Maximilians-Universität München (LMU)
University College London (UCL)
Friedrich-Alexander-Universität Erlangen-Nürnberg (FAU Erlangen-Nürnberg)
Kiel University
Ruhr-Universität Bochum
Movement Disorders Hospital Beelitz
Otto-von-Guericke University Magdeburg
Parkinson-Klinik Ortenau
Charité - Universitätsmedizin Berlin
German Center for Neurodegenerative Diseases (DZNE)
University of Münster
Klinikum Osnabrück GmbH
University Hospital Gießen and Marburg
Knappschaftskrankenhaus Bottrop
Paracelsus-Elena Klinik
Leipzig University
Klinik Haag i. OB
Universität Hamburg
Ulm University
University Hospital Düsseldorf
Munich Cluster for Systems Neurology (SyNergy)
Type: Article
Journal: Movement disorders
Volume: 39
Pages: 1602-1609
No. of pages: 8
ISSN: 0885-3185
Publication date: 09.2024
Publication status: Published
Peer reviewed: Yes
ASJC Scopus subject areas: Neurology, Clinical Neurology
Electronic version(s): https://doi.org/10.1002/mds.29936 (Access: Closed)
https://pub.dzne.de/search?p=id:%22DZNE-2024-01273%22 (Access: Open)

BibTeX

@article{cf5a461941d6470bb85a2079a115815d,
title = "A Short Progressive Supranuclear Palsy Quality of Life Scale",
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.",
keywords = "health-related quality of life, progressive supranuclear palsy, PSP Quality of Life scale, rating scale",
author = "Ida Jensen and Stephanie Stiel and Sarah Bebermeier and Anette Schrag and Stephan Greten and Johanna Doll-Lee and Florian Wegner and Lan Ye and Johanne Heine and Lea Krey and Matthias H{\"o}llerhage and S. Patrick and J{\"u}rgen Winkler and Daniela Berg and Steffen Paschen and Lars T{\"o}nges and Doreen Gruber and Florin Gandor and Jost, {Wolfgang H.} and K{\"u}hn, {Andrea A.} and Inga Claus and Tobias Warnecke and Pedrosa, {David J.} and Carsten Eggers and Claudia Trenkwalder and Joseph Classen and Johannes Schwarz and Monika P{\"o}tter-Nerger and Jan Kassubek and Alfons Schnitzler and H{\"o}glinger, {G{\"u}nter U.} and Martin Klietz",
note = "Publisher Copyright: {\textcopyright} 2024 The Author(s). Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.",
year = "2024",
month = sep,
doi = "10.1002/mds.29936",
language = "English",
volume = "39",
pages = "1602--1609",
journal = "Movement disorders",
issn = "0885-3185",
publisher = "John Wiley and Sons Inc.",
number = "9",
}