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

Amin Mohamed Abu Baker; Harriet Moore; Kathleen Baster; Esther Hobson; David Paling; Basil Sharrack; Krishnan Padmakumari Sivaraman Nair

doi:10.1177/27536351231197142

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

Adv Rehabil Sci Pract. 2023 Sep 19:12:27536351231197142. doi: 10.1177/27536351231197142. eCollection 2023 Jan-Dec.

Authors

Amin Mohamed Abu Baker¹, Harriet Moore¹, Kathleen Baster², Esther Hobson¹, David Paling¹, Basil Sharrack¹, Krishnan Padmakumari Sivaraman Nair¹

Affiliations

¹ Department of Neurology, Sheffield Teaching Hospitals NHS Foundation Trust, The University of Sheffield, Sheffield, UK.
² School of Mathematics and Statistics, Statistical Services Unit, The University of Sheffield, Sheffield, UK.

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.