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Living with chronic illness scale in Parkinson's disease: longitudinal metric properties and meaningful change

Living with chronic illness scale in Parkinson's disease: longitudinal metric properties and meaningful change
Living with chronic illness scale in Parkinson's disease: longitudinal metric properties and meaningful change

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.

Effect size, Living with, Measurement properties, Minimally clinical important difference, Parkinson disease, Patient reported outcome, Responsiveness
1353-8020
1-5
Rodriguez-Blazquez, Carmen
ab193914-8cd7-4c00-893f-14e14a32152c
Violante, Mayela Rodriguez
04772cb5-84de-465a-95d3-b4736a190975
Arakaki, Tomoko
6310f127-e6a9-42c1-ba8a-ef236f393c0f
Garretto, Nelida Susana
4728f6fb-d427-42ed-ba86-9a08aeb87c62
Serrano-Dueñas, Marcos
97098f9f-4a20-4203-915a-1dd8d561b350
Ibáñez, Ivonne Pedroso
90999432-aac4-4f25-81ec-341b2f54b6dc
Ambrosio, Leire
0a21749c-3817-49de-bf15-0ea9233ecc5c
Rodriguez-Blazquez, Carmen
ab193914-8cd7-4c00-893f-14e14a32152c
Violante, Mayela Rodriguez
04772cb5-84de-465a-95d3-b4736a190975
Arakaki, Tomoko
6310f127-e6a9-42c1-ba8a-ef236f393c0f
Garretto, Nelida Susana
4728f6fb-d427-42ed-ba86-9a08aeb87c62
Serrano-Dueñas, Marcos
97098f9f-4a20-4203-915a-1dd8d561b350
Ibáñez, Ivonne Pedroso
90999432-aac4-4f25-81ec-341b2f54b6dc
Ambrosio, Leire
0a21749c-3817-49de-bf15-0ea9233ecc5c

Rodriguez-Blazquez, Carmen, Violante, Mayela Rodriguez, Arakaki, Tomoko, Garretto, Nelida Susana, Serrano-Dueñas, Marcos, Ibáñez, Ivonne Pedroso and Ambrosio, Leire (2022) Living with chronic illness scale in Parkinson's disease: longitudinal metric properties and meaningful change. Parkinsonism and Related Disorders, 96, 1-5. (doi:10.1016/j.parkreldis.2022.01.007).

Record type: Article

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.

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Living with Chronic Illness Scale in Parkinson's disease - Accepted Manuscript
Restricted to Repository staff only until 29 January 2023.
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Accepted/In Press date: 7 January 2022
Published date: 13 January 2022
Additional Information: Funding Information: In addition to the LW-CI-PD scale, the Spanish version of the following PROM were applied: (1) Scales for Outcomes in Parkinson's Disease-Psychosocial (SCOPA-PS) [19]; (2) Duke-UNC Functional Social Support Questionnaire (DUFSS) [20]; (3) Patient-Based Global Impression of Severity Scale (PGIS) [21]; and (4) the modified version of the Satisfaction with Life Scale [22] (SLS-6). See Table 1 for further detail of included scales. For all scales, except DUFSS and SLS-6, higher scores denote greater severity or difficulty. Correlations (see Data analysis) considered the different directions scored in each scale. Publisher Copyright: © 2022 Copyright: Copyright 2022 Elsevier B.V., All rights reserved.
Keywords: Effect size, Living with, Measurement properties, Minimally clinical important difference, Parkinson disease, Patient reported outcome, Responsiveness

Identifiers

Local EPrints ID: 454270
URI: http://eprints.soton.ac.uk/id/eprint/454270
ISSN: 1353-8020
PURE UUID: bb661b32-773f-4673-bdf7-e5d405ab73c2

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Date deposited: 04 Feb 2022 17:38
Last modified: 27 Apr 2022 11:47

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Contributors

Author: Carmen Rodriguez-Blazquez
Author: Mayela Rodriguez Violante
Author: Tomoko Arakaki
Author: Nelida Susana Garretto
Author: Marcos Serrano-Dueñas
Author: Ivonne Pedroso Ibáñez
Author: Leire Ambrosio

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