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. 2023 Sep 19:12:27536351231197142.
doi: 10.1177/27536351231197142. eCollection 2023 Jan-Dec.

Psychometric Properties of LUN-MS: A New Questionnaire to Identify the Unmet Needs of People With Multiple Sclerosis

Amin Mohamed Abu Baker  1 , Harriet Moore  1 , Kathleen Baster  2 , Esther Hobson  1 , David Paling  1 , Basil Sharrack  1 , Krishnan Padmakumari Sivaraman Nair  1
Affiliations

Psychometric Properties of LUN-MS: A New Questionnaire to Identify the Unmet Needs of People With Multiple Sclerosis

Amin Mohamed Abu Baker et al. Adv Rehabil Sci Pract. .

Abstract

Background: We developed a 29-item Questionnaire, Long-term Unmet Needs in MS (LUN-MS) to identify the unmet needs of people with multiple sclerosis (pwMS).

Objective: To assess acceptability, test-retest reliability, internal consistency, and validity of the LUN-MS.

Methods: Participants completed the LUN-MS and MSIS-29 twice, four weeks apart. Acceptability was assessed by looking at the response rate in each time point. Reliability was calculated by comparing the response during the two time points using Cohen's weighted kappa. Using principal component analysis, the dimensionality of the questionnaire's items was reduced, to five domains and the internal consistency of each domain was assessed using Cronbach's alpha. Concurrent validity was tested by comparing the total LUN-MS score against MSIS-29 and EQ-5D-3L using Pearson's product-moment correlation coefficient.

Results: Among 88 participants, rate of completion at time points-1 and 2 was 96 and 80% respectively. Test-retest reliability for individual items was between fair to near-perfect (weighted Cohen's kappa 0.39-0.81). The unmet needs could be divided into five internally consistent domains (Cronbach's alpha 0.83-0.74): neuropsychological, ambulation, physical, interpersonal relationship and informational. Concurrent validity with MSIS-29 (r = 0.705, P < .001) and EQ-5D-3L (r = 0.617, P < .001) were good.

Conclusion: LUN-MS is a reliable, valid, and acceptable tool to identify the unmet needs of pwMS.

Keywords: Multiple sclerosis; neurological conditions; patient reported outcome measure; rehabilitation; unmet needs.

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Conflict of interest statement

The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Amin Mohamed Abu Baker has no disclosures to make. Harriet Moore has no disclosures to make. Dr Kathleen Baster is employed by the Statistical Services Unit, The University of Sheffield who was paid to provide statistical support and advice on the analysis for this study. She has no disclosures to make. Dr Esther Hobson has no disclosures to make. Dr David Paling reports travel support, honoraria from speaking and ad boards from Novartis, Celgene, Biogen, Sanofi Genzyme, MedDay, Merck and Roche. Prof. Basil Sharrack had led clinical trials of disease modifying drugs for Novartis, Celgene, Biogen, Sanofi Genzyme, Merck and Roche. Prof. Krishnan Padmakumari Sivaraman Nair has led clinical trials on spasticity in MS for Celgene and GWS pharma.

Figures

Figure 1.
Figure 1.
The flow of participants through the study with reasons for exclusion at each stage.
Figure 2.
Figure 2.
Scatterplot matrix of long-term Unmet Needs in multiple sclerosis (LUN-MS) with Multiple Sclerosis Impact Scale (MSIS-29), EuroQoL EQ-5D-3L and EQ vertical visual analogue scale (EQ VAS).
See this image and copyright information in PMC

References

    1. World Health Organization. Constitution of the World Health Organization.45th ed. World Health Organization; 2005.
    1. Wright J, Williams R, Wilkinson JR. Development and importance of health needs assessment. BMJ. 1998;316:1310-1313. - PMC - PubMed
    1. Aragon MJ, Chalkley M, Goddard MK. Defining and Measuring Unmet Need to Guide Healthcare Funding: Identifying and Filling the Gaps. Centre for Health Economics, University of York; 2017.
    1. Kirkland C. Identifying the Unmet Needs in patients with Multiple Sclerosis: Developing the LUN-MS Questionnaire. Master thesis. Neurology Academy; 2018.
    1. Senders A, Sando K, Wahbeh H, et al.. Managing psychological stress in the multiple sclerosis medical visit: patient perspectives and unmet needs. J Health Psychol. 2016;21:1676-1687. - PMC - PubMed

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