A Modified Progressive Supranuclear Palsy Rating Scale
(2021) In Movement Disorders 36(5). p.1203-1215- Abstract
Background: The Progressive Supranuclear Palsy Rating Scale is a prospectively validated physician-rated measure of disease severity for progressive supranuclear palsy. We hypothesized that, according to experts' opinion, individual scores of items would differ in relevance for patients' quality of life, functionality in daily living, and mortality. Thus, changes in the score may not equate to clinically meaningful changes in the patient's status. Objective: The aim of this work was to establish a condensed modified version of the scale focusing on meaningful disease milestones. Methods: Sixteen movement disorders experts evaluated each scale item for its capacity to capture disease milestones (0 = no, 1 = moderate, 2 = severe... (More)
Background: The Progressive Supranuclear Palsy Rating Scale is a prospectively validated physician-rated measure of disease severity for progressive supranuclear palsy. We hypothesized that, according to experts' opinion, individual scores of items would differ in relevance for patients' quality of life, functionality in daily living, and mortality. Thus, changes in the score may not equate to clinically meaningful changes in the patient's status. Objective: The aim of this work was to establish a condensed modified version of the scale focusing on meaningful disease milestones. Methods: Sixteen movement disorders experts evaluated each scale item for its capacity to capture disease milestones (0 = no, 1 = moderate, 2 = severe milestone). Items not capturing severe milestones were eliminated. Remaining items were recalibrated in proportion to milestone severity by collapsing across response categories that yielded identical milestone severity grades. Items with low sensitivity to change were eliminated, based on power calculations using longitudinal 12-month follow-up data from 86 patients with possible or probable progressive supranuclear palsy. Results: The modified scale retained 14 items (yielding 0–2 points each). The items were rated as functionally relevant to disease milestones with comparable severity. The modified scale was sensitive to change over 6 and 12 months and of similar power for clinical trials of disease-modifying therapy as the original scale (achieving 80% power for two-sample t test to detect a 50% slowing with n = 41 and 25% slowing with n = 159 at 12 months). Conclusions: The modified Progressive Supranuclear Palsy Rating Scale may serve as a clinimetrically sound scale to monitor disease progression in clinical trials and routine.
(Less)
- author
- organization
- publishing date
- 2021-05-01
- type
- Contribution to journal
- publication status
- published
- subject
- keywords
- clinical meaningfulness, progressive supranuclear palsy, rating scale, sensitivity to change
- in
- Movement Disorders
- volume
- 36
- issue
- 5
- pages
- 13 pages
- publisher
- John Wiley & Sons Inc.
- external identifiers
-
- pmid:33513292
- scopus:85100574052
- ISSN
- 0885-3185
- DOI
- 10.1002/mds.28470
- language
- English
- LU publication?
- yes
- id
- b804cc28-2b79-4a05-96ac-ac0c9e16cc38
- date added to LUP
- 2021-02-26 11:24:22
- date last changed
- 2024-04-18 02:20:12
@article{b804cc28-2b79-4a05-96ac-ac0c9e16cc38,
abstract = {{<p>Background: The Progressive Supranuclear Palsy Rating Scale is a prospectively validated physician-rated measure of disease severity for progressive supranuclear palsy. We hypothesized that, according to experts' opinion, individual scores of items would differ in relevance for patients' quality of life, functionality in daily living, and mortality. Thus, changes in the score may not equate to clinically meaningful changes in the patient's status. Objective: The aim of this work was to establish a condensed modified version of the scale focusing on meaningful disease milestones. Methods: Sixteen movement disorders experts evaluated each scale item for its capacity to capture disease milestones (0 = no, 1 = moderate, 2 = severe milestone). Items not capturing severe milestones were eliminated. Remaining items were recalibrated in proportion to milestone severity by collapsing across response categories that yielded identical milestone severity grades. Items with low sensitivity to change were eliminated, based on power calculations using longitudinal 12-month follow-up data from 86 patients with possible or probable progressive supranuclear palsy. Results: The modified scale retained 14 items (yielding 0–2 points each). The items were rated as functionally relevant to disease milestones with comparable severity. The modified scale was sensitive to change over 6 and 12 months and of similar power for clinical trials of disease-modifying therapy as the original scale (achieving 80% power for two-sample t test to detect a 50% slowing with n = 41 and 25% slowing with n = 159 at 12 months). Conclusions: The modified Progressive Supranuclear Palsy Rating Scale may serve as a clinimetrically sound scale to monitor disease progression in clinical trials and routine.</p>}},
author = {{Grötsch, Marie Therese and Respondek, Gesine and Colosimo, Carlo and Compta, Yaroslau and Corvol, Jean Christophe and Ferreira, Joaquim and Huber, Meret Koroni and Klietz, Martin and Krey, Lea F.M. and Levin, Johannes and Jecmenica-Lukic, Milica and Macías-García, Daniel and Meissner, Wassilios G. and Mir, Pablo and Morris, Huw and Nilsson, Christer and Rowe, James B. and Seppi, Klaus and Stamelou, Maria and van Swieten, John C. and Wenning, Gregor and Del Ser, Teodoro and Golbe, Lawrence I. and Höglinger, Günter U.}},
issn = {{0885-3185}},
keywords = {{clinical meaningfulness; progressive supranuclear palsy; rating scale; sensitivity to change}},
language = {{eng}},
month = {{05}},
number = {{5}},
pages = {{1203--1215}},
publisher = {{John Wiley & Sons Inc.}},
series = {{Movement Disorders}},
title = {{A Modified Progressive Supranuclear Palsy Rating Scale}},
url = {{http://dx.doi.org/10.1002/mds.28470}},
doi = {{10.1002/mds.28470}},
volume = {{36}},
year = {{2021}},
}