A Short Progressive Supranuclear Palsy Quality of Life Scale

Verfasst von

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.

Details

Organisationseinheit(en): Institut für Psychologie
Externe Organisation(en): Medizinische Hochschule Hannover (MHH)
Ludwig-Maximilians-Universität München (LMU)
University College London (UCL)
Friedrich-Alexander-Universität Erlangen-Nürnberg (FAU Erlangen-Nürnberg)
Christian-Albrechts-Universität zu Kiel (CAU)
Ruhr-Universität Bochum
Neurologisches Fachkrankenhaus für Bewegungsstörungen/Parkinson
Otto-von-Guericke-Universität Magdeburg
Parkinson-Klinik Ortenau GmbH&Co KG
Charité - Universitätsmedizin Berlin
Deutsches Zentrum für Neurodegenerative Erkrankungen e. V. (DZNE)
Westfälische Wilhelms-Universität Münster (WWU)
Klinikum Osnabrück GmbH
Universitätsklinikum Gießen und Marburg GmbH
Knappschaftskrankenhaus Bottrop GmbH
Paracelsus-Elena Klinik
Universität Leipzig
InnKlinikum Haag i. OB
Universität Hamburg
Universität Ulm
Universitätsklinikum Düsseldorf
Munich Cluster for Systems Neurology (SyNergy)
Typ: Artikel
Journal: Movement disorders
Band: 39
Seiten: 1602-1609
Anzahl der Seiten: 8
ISSN: 0885-3185
Publikationsdatum: 09.2024
Publikationsstatus: Veröffentlicht
Peer-reviewed: Ja
ASJC Scopus Sachgebiete: Neurologie, Klinische Neurologie
Elektronische Version(en): https://doi.org/10.1002/mds.29936 (Zugang: Geschlossen )
https://pub.dzne.de/search?p=id:%22DZNE-2024-01273%22 (Zugang: Offen )

Zitieren

A Short Progressive Supranuclear Palsy Quality of Life Scale. / Jensen, Ida; Stiel, Stephanie; Bebermeier, Sarah et al.
in: Movement disorders, Jahrgang 39, Nr. 9, 09.2024, S. 1602-1609.

Publikation: Beitrag in Fachzeitschrift › Artikel › Forschung › Peer-Review

@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 & Sons Inc.",
  number = "9"
}