1. OFF episode quality of life impact scale (OFFELIA): A new measure of quality of life for off episodes in Parkinson's disease.
- Author
-
Kuharic M, Kulbokas V, Hanson K, Nazari JL, Shah KK, Nguyen A, Hensle T, Marras C, Armstrong MJ, Jalundhwala YJ, and Pickard AS
- Subjects
- Humans, Male, Female, Middle Aged, Aged, Cross-Sectional Studies, Surveys and Questionnaires standards, Reproducibility of Results, Antiparkinson Agents therapeutic use, Parkinson Disease psychology, Quality of Life, Psychometrics standards
- Abstract
Introduction: OFF Episodes occur in people with Parkinson's disease when their medication wears off, and motor and/or non-motor symptoms emerge. Existing measures used to assess OFF Episodes focus on the time spent in OFF Episodes through diaries or by identifying symptoms, but they are limited in their ability to capture the severity and functional impact of OFF episodes. The aim of this study was to develop and validate a new instrument, called "OFFELIA," that measures the impact of OFF episodes on the quality of life of individuals with Parkinson's disease., Methods: Participants completed a cross-sectional questionnaire, "Impact and Communication on OFF Periods," while enrolled in the online clinical study Fox Insights. The data collected was used to develop OFFELIA. Psychometric testing was performed on 18 candidate items using classical, exploratory factor analysis, and item response theory methods., Results: 569 individuals with Parkinson's disease completed the questionnaire. All items were retained for the final measure, with 17 items aggregated into two multi-item scales (functioning and psychological well-being) and one item reported separately as it did not function well with the other items (employment). Known group comparisons based on average duration, frequency and unpredictability of OFF episodes indicated that OFFELIA subscales were more sensitive than existing generic and condition-specific measures., Conclusion: Initial evidence supports the validity of OFFELIA, a new instrument that assesses the impact of OFF periods on daily life. This instrument can be used in assessing clinical therapeutic strategies targeting OFF episodes in Parkinson's disease., Competing Interests: Declaration of competing interest The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: Connie Marras reports a relationship with The Michael J Fox Foundation that includes: funding grants. Melissa J. Armstrong reports a relationship with The Michael J Fox Foundation that includes: funding grants. Yash J. Jalundhwala reports a relationship with AbbVie Inc that includes: employment and equity or stocks. Maja Kuharic reports a relationship with AbbVie that includes: consultancy fees. If there are other authors, they declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)
- Published
- 2024
- Full Text
- View/download PDF