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. 2024 Sep;39(9):1602-1609.
doi: 10.1002/mds.29936. Epub 2024 Jul 26.

A Short Progressive Supranuclear Palsy Quality of Life Scale

Ida Wilkens  1   2 , Stephanie Stiel  3 , Sarah Bebermeier  4 , Anette Schrag  5 , Stephan Greten  1 , Johanna Doll-Lee  1 , Florian Wegner  1 , Lan Ye  1 , Johanne Heine  1 , Lea Krey  1 , Matthias Höllerhage  1 , Patrick Süß  6   7 , Jürgen Winkler  6   7 , Daniela Berg  8 , Steffen Paschen  8 , Lars Tönges  9   10 , Doreen Gruber  11   12 , Florin Gandor  11   12 , Wolfgang H Jost  13 , Andrea A Kühn  14   15 , Inga Claus  16 , Tobias Warnecke  17 , David J Pedrosa  18 , Carsten Eggers  19 , Claudia Trenkwalder  20 , Joseph Classen  21 , Johannes Schwarz  22 , Monika Pötter-Nerger  23 , Jan Kassubek  24   25 , Alfons Schnitzler  26 , Günter U Höglinger  2   27 , Martin Klietz  1
Affiliations

A Short Progressive Supranuclear Palsy Quality of Life Scale

Ida Wilkens et al. Mov Disord. 2024 Sep.

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.

Keywords: PSP Quality of Life scale; health‐related quality of life; progressive supranuclear palsy; rating scale.

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References

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