A Short Progressive Supranuclear Palsy Quality of Life Scale.
PSP Quality of Life scale
health‐related quality of life
progressive supranuclear palsy
rating scale
Journal
Movement disorders : official journal of the Movement Disorder Society
ISSN: 1531-8257
Titre abrégé: Mov Disord
Pays: United States
ID NLM: 8610688
Informations de publication
Date de publication:
26 Jul 2024
26 Jul 2024
Historique:
revised:
27
05
2024
received:
20
03
2024
accepted:
13
06
2024
medline:
26
7
2024
pubmed:
26
7
2024
entrez:
26
7
2024
Statut:
aheadofprint
Résumé
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. 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. 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. 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.
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Informations de copyright
© 2024 The Author(s). Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.
Références
Höglinger GU, Respondek G, Stamelou M, et al. Clinical diagnosis of progressive supranuclear palsy: the movement disorder society criteria. Mov Disord 2017;32(6):853–864.
Levin J, Kurz A, Arzberger T, Giese A, Höglinger GU. Differenzial diagnose und Therapie der atypischen Parkinson‐Syndrome. Dtsch Arztebl Int 2016;113(5):61–69.
Schrag A, Selai C, Quinn N, Hobart J. Measuring health‐related quality of life in patients with progressive supranuclear palsy. Neurocase 2005;11(4):246–249.
Schrag A, Selai C, Quinn N, et al. Measuring quality of life in PSP: the PSP‐QoL. Neurology 2006;67(1):39–44.
Marinus J, Ramaker C, vanHilten JJ, Stiggelbout A. Health related quality of life in Parkinson's disease: a systematic review of disease specific instruments. J Neurol Neurosurg Psychiatry 2002;72(2):241–248.
Pantelyat A, Higginbotham L, Rosenthal L, et al. Association of Progressive Supranuclear Palsy Rating Scale with progressive Supranuclear palsy quality of life scale. Neurodegener Dis 2021;20(4):139–146.
Respondek G, Höglinger GU. DescribePSP and ProPSP: German multicenter networks for standardized prospective collection of clinical data, imaging data, and biomaterials of patients with progressive Supranuclear palsy. Front Neurol 2021;12:644.
Golbe LI, Ohman‐Strickland PA. A clinical rating scale for progressive supranuclear palsy. Brain 2007;130(Pt 6):1552–1565.
Nasreddine ZS, Phillips NA, Bédirian V, et al. The Montreal cognitive assessment, MoCA: a brief screening tool for mild cognitive impairment. J Am Geriatr Soc 2005;53(4):695–699.
Almeida OP, Almeida SA. Short versions of the geriatric depression scale: a study of their validity for the diagnosis of a major depressive episode according to ICD‐10 and DSM‐IV. Int J Geriatr Psychiatry 1999;14(10):858–865.
Schrag A, Selai C, Davis J, Lees AJ, Jahanshahi M, Quinn N. Health‐related quality of life in patients with progressive supranuclear palsy. Mov Disord 2003;18(12):1464–1469.
Rosseel YI, An R. Package for structural equation modeling. J Stat Softw 2012;48(2):1–36.
Schafer JL, Graham JW. Missing data: our view of the state of the art. Psychol Methods 2002;7(2):147–177.
Wirtz M. Über das Problem fehlender Werte: Wie der Einfluss fehlender Informationen auf Analyseergebnisse entdeckt und reduziert werden kann. Rehabilitation (Stuttg) 2004;43(2):109–115.
Rubin DB. Multiple Imputation for Nonresponse in Surveys. Vol. 81. Hoboken, NJ: John Wiley & Sons; 2004.
Schunk DA. Markov chain Monte Carlo algorithm for multiple imputation in large surveys. AStA Adv Stat Anal 2008;92(1):101–114.
Berry WD. Understanding Regression Assumptions. Thousand Oaks, CA: SAGE Publications; 1993.
Urban D, Mayerl J. Regressionsanalyse: Theorie, Technik Und Anwendung [Regression Analysis: Theory, Technique and Application]; 2008.
Güvendir M, Özer ÖY. Item removal strategies conducted in exploratory factor analysis: a comparative study. Int J Assess Tool Educ 2022;9(1):165–180.
Gäde JC, Schermelleh‐Engel K, Brandt H. Konfirmatorische Faktorenanalyse (CFA). In: Moosbrugger H, Kelava A, eds. Testtheorie und Fragebogenkonstruktion. Berlin: Springer; 2020:615–659.
Beauducel A, Wittmann WW. Simulation study on fit indexes in CFA based on data with slightly distorted simple structure. Struct Equ Model Multidiscip J 2005;12(1):41–75.
Hu LT, Bentler PM. Cutoff criteria for fit indexes in covariance structure analysis: conventional criteria versus new alternatives. Struct Equ Model Multidiscip J 1999;6(1):1–55.
Grimm MJ, Respondek G, Stamelou M, et al. How to apply the movement disorder society criteria for diagnosis of progressive supranuclear palsy. Mov Disord 2019;34(8):1228–1232.
Cohen J. Statistical Power Analysis for the Behavioral Sciences. Mahwah, NJ: L. Erlbaum Associates; 1988.
Santacruz P, Gilbert R. Progressive supranuclear palsy: a survey of the disease course. Neurology 1998;50(6):1637–1647.
Klietz M, Tulke A, Müschen LH, Paracka L, Schrader C, Dressler DW, Wegner F. Impaired quality of life and need for palliative Care in a German Cohort of advanced Parkinson's disease patients. Front Neurol 2018;9:120.
Kellermair L, Fuchs A, Eggers C, et al. Caregiver strain in progressive supranuclear palsy and corticobasal syndromes. J Neural Transm (Vienna) 2021;128(10):1611–1621.
Ruiz‐Barrio I, Horta‐Barba A, Aracil‐Bolaños I, Martinez‐Horta S, Kulisevsky J, Pagonabarraga J. Predicting disability in progressive Supranuclear palsy using bedside frontal‐lobe signs. Mov Disord Clin Pract 2024;11(3):248–256.
Picillo M, Cuoco S, Amboni M, et al. Validation of the Italian version of the PSP quality of life questionnaire. Neurol Sci 2019;40(12):2587–2594.
Donker KL, Boon AJW, Kamphorst W, Ravid R, Duivenvoorden HJ, vanSwieten JC. Frontal presentation in progressive supranuclear palsy. Neurology 2007;69(8):723–729.
Respondek G, Stamelou M, Kurz C, et al. The phenotypic spectrum of progressive supranuclear palsy: a retrospective multicenter study of 100 definite cases. Mov Disord 2014;29(14):1758–1766.