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. 2023 Jun 30;13(6):e071657.
doi: 10.1136/bmjopen-2023-071657.

Development and psychometric properties of a self-assessed knowledge questionnaire for caregivers of people with multiple sclerosis (CareKoMS): a cross-sectional study

Jessica Podda  1 , Andrea Tacchino  2 , Anna Verri  2 , Mario Alberto Battaglia  3 , Giampaolo Brichetto  2   4 , Michela Ponzio  2
Affiliations

Development and psychometric properties of a self-assessed knowledge questionnaire for caregivers of people with multiple sclerosis (CareKoMS): a cross-sectional study

Jessica Podda et al. BMJ Open. .

Abstract

Objectives: Knowledge about multiple sclerosis (MS) is crucial for those who provide care and support as caregivers. However, despite the key benefits of acquiring relevant information to properly assume the caregiving role, caregivers' knowledge of MS is poorly investigated. The aim of this study was to develop and validate the Caregivers' Knowledge of Multiple Sclerosis (CareKoMS), a self-assessed questionnaire, to test MS knowledge in caregivers of people with MS.

Design: Cross-sectional study.

Setting: Italy.

Participants: Two-hundred caregivers (female: 49%) were asked to self-administer the 32-item CareKoMS questionnaire; they had a median age of 60 years (IQR: 51-68 years) and a medium-high educational level (36.5% primary school and 63.5% high school/university). Item analysis using item difficulty index, item discrimination index, Kuder-Richardson-20 coefficient and item-total correlation were assessed. Once excluding less useful items, reliability, floor and ceiling effects and construct validity were calculated on the 21-item CareKoMS final version.

Results: Psychometric evaluation indicates that the 21-item CareKoMS was a good questionnaire with no ceiling or floor effects registered. Internal consistency was satisfactory and acceptable as indicated by the mean value of 0.74 of Kuder-Richardson-20. No ceiling or floor effects have been observed. Interestingly, educational level and disease duration correlated with MS knowledge.

Conclusion: CareKoMS is a valid self-assessed questionnaire on MS knowledge for caregivers that may be used in clinical practice and research. Assessing knowledge of MS among caregivers is essential to facilitate their caregiving role and thus decrease the burden of disease management.

Keywords: caregivers; knowledge; multiple sclerosis; questionnaire; validation.

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Conflict of interest statement

Competing interests: None declared.

Figures

Figure 1
Figure 1
Distribution of MS caregivers’ answers to each CareKoMS questionnaire item. Percentage of correct responses provided by caregivers of pwMS to each item is represented in light grey scale colour, while incorrect responses are in dark grey colour. CareKoMS, Caregivers’ Knowledge of Multiple Sclerosis.
Figure 2
Figure 2
Known groups technique to compare CareKoMS scores between educational level, age and sex. Box-plot graphs show associations between CareKoMS scores (vertical axis) and caregivers’ characteristics as educational level (panel A), age (panel B) and sex (panel C) (horizontal axis). Dots represent outliers. CareKoMS, Caregivers’ Knowledge of Multiple Sclerosis.
Figure 3
Figure 3
Known groups technique to compare CareKoMS scores between disease duration and self-EDSS. Box-plot graphs show associations between CareKoMS scores (vertical axis) and disease-related characteristics of the care recipient as disease duration (panel A) and self-EDSS (panel B) (horizontal axis). Dots represent outliers. CareKoMS, Caregivers’ Knowledge of Multiple Sclerosis; self-EDSS, self-Expanded Disability Status Scale.
See this image and copyright information in PMC

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