TY - JOUR

T1 - A Short Progressive Supranuclear Palsy Quality of Life Scale

AU - Jensen, Ida

AU - Stiel, Stephanie

AU - Bebermeier, Sarah

AU - Schrag, Anette

AU - Greten, Stephan

AU - Doll-Lee, Johanna

AU - Wegner, Florian

AU - Ye, Lan

AU - Heine, Johanne

AU - Krey, Lea

AU - Höllerhage, Matthias

AU - Patrick, S.

AU - Winkler, Jürgen

AU - Berg, Daniela

AU - Paschen, Steffen

AU - Tönges, Lars

AU - Gruber, Doreen

AU - Gandor, Florin

AU - Jost, Wolfgang H.

AU - Kühn, Andrea A.

AU - Claus, Inga

AU - Warnecke, Tobias

AU - Pedrosa, David J.

AU - Eggers, Carsten

AU - Trenkwalder, Claudia

AU - Classen, Joseph

AU - Schwarz, Johannes

AU - Pötter-Nerger, Monika

AU - Kassubek, Jan

AU - Schnitzler, Alfons

AU - Höglinger, Günter U.

AU - Klietz, Martin

N1 - Publisher Copyright: © 2024 The Author(s). Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.

PY - 2024/9

Y1 - 2024/9

N2 - 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.

AB - 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.

KW - health-related quality of life

KW - progressive supranuclear palsy

KW - PSP Quality of Life scale

KW - rating scale

UR - http://www.scopus.com/inward/record.url?scp=85199873282&partnerID=8YFLogxK

U2 - 10.1002/mds.29936

DO - 10.1002/mds.29936

M3 - Article

C2 - 39056204

AN - SCOPUS:85199873282

VL - 39

SP - 1602

EP - 1609

JO - Movement disorders

JF - Movement disorders

SN - 0885-3185

IS - 9

ER -