Living with chronic illness scale in Parkinson's disease: Longitudinal metric properties and meaningful change. (March 2022)

• Record Type: Journal Article
• Authors: Rodriguez-Blazquez, Carmen; Rodriguez Violante, Mayela; Arakaki, Tomoko; Garretto, Nelida Susana; Serrano-Dueñas, Marcos; Ibáñez, Ivonne Pedroso; Ambrosio, Leire
• Is Part Of: Parkinsonism & related disorders. Volume 96(2022)
• Page Start: 1
• Page End: 5
• Publication Date: 2022-03
• Subjects: Living with -- Parkinson disease -- Responsiveness -- Effect size -- Minimally clinical important difference -- Patient reported outcome -- Measurement properties; Parkinson's disease -- Periodicals; Movement disorders -- Periodicals; Movement Disorders -- Periodicals; Nerve Degeneration -- Periodicals; Nervous System Diseases -- Periodicals; Parkinson Disease -- Periodicals; Tremor -- Periodicals; Parkinson, Maladie de -- Périodiques; Parkinson's disease; 616.833
• DOI: 10.1016/j.parkreldis.2022.01.007
• Languages: English
• ISSNs: 1353-8020

Abstract

Abstract: Aim: To analyze the responsiveness and interpretability of the Living with Chronic Illness Scale in patients with Parkinson's disease (LW-CI-PD). Methods: Longitudinal, international study, with a convenience sample of 153 PD Spanish and Latin-American patients assessed at baseline and one year later. The LW-CI-PD and other clinical measures were applied. For responsiveness, Wilcoxon-Mann-Whitney test of differences, correlation of change between rating scales, standard error of difference, relative change, Cohen's effect size and standardized response mean of LW-CI-PD were computed. The minimally clinical important difference was calculated using anchor- (applying the Patient Global Impression of Severity) and distribution-based methods. A triangulation of interpretability indexes was performed to determine the range of the minimally clinical important difference values. Results: The LW-CI-PD scored 65.7 (11.7, range: 33–101) at baseline, and 68.6 (10.3, range: 33–102) one year later (p < 0.001). Change in LW-CI-PD correlated −0.26 with change in psychosocial status, 0.18 with change in motor function and −0.15 with change in social support. Responsiveness statistics were: relative change = 4.5%; effect size = 0.25; standardized response mean = 0.46. Using PGI-S as anchor, 29 patients worsened, and the value of minimally clinical important difference for worsening in LW-CI-PD total score was 4.7. Minimally clinical important difference values using distribution-based methods were between 4.5 (1 standard error of measurement) and 10.4 (10% of total score), with a mean of 6.9. Conclusions: Our study suggest the LW-CI-PD is responsive to changes over time. The use of different methods for calculating the minimally clinical important difference allows to determine a range of the real change for the LW-CI-PD. Highlights: Responsiveness and interpretability statistics are essential attributes that allow for patient-reported outcomes measures to be used in clinical trials and routine clinical practice. The Living with Chronic Illness scale for Parkinson's disease (LW-CI-PD) has been tested in a longitudinal, observational, international study to establish its responsiveness and identify the value of its minimal important change (MIC), using different procedures. Results suggest the LW-CI-PD is sensitive to changes over time and the value of MIC for worsening is 6.6 points.