Mohamed Abu Baker Amin, Moore Harriet, Baster Kathleen, Hobson Esther, Paling David, Sharrack Basil, Nair Krishnan Padmakumari Sivaraman
Department of Neurology, Sheffield Teaching Hospitals NHS Foundation Trust, The University of Sheffield, Sheffield, UK.
School of Mathematics and Statistics, Statistical Services Unit, The University of Sheffield, Sheffield, UK.
Adv Rehabil Sci Pract. 2023 Sep 19;12:27536351231197142. doi: 10.1177/27536351231197142. eCollection 2023 Jan-Dec.
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).
To assess acceptability, test-retest reliability, internal consistency, and validity of the LUN-MS.
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.
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 ( = 0.705, < .001) and EQ-5D-3L ( = 0.617, < .001) were good.
LUN-MS is a reliable, valid, and acceptable tool to identify the unmet needs of pwMS.
我们编制了一份包含29个条目的问卷——多发性硬化长期未满足需求问卷（LUN-MS），以识别多发性硬化症患者（pwMS）未满足的需求。
评估LUN-MS的可接受性、重测信度、内部一致性和效度。
参与者分两次完成LUN-MS和MSIS-29问卷，间隔四周。通过查看每个时间点的回复率来评估可接受性。使用科恩加权kappa系数比较两个时间点的回复情况来计算信度。通过主成分分析减少问卷条目的维度，形成五个领域，并使用克朗巴哈系数评估每个领域的内部一致性。通过使用皮尔逊积差相关系数将LUN-MS总分与MSIS-29和EQ-5D-3L进行比较来检验同时效度。
在88名参与者中，时间点1和时间点2的完成率分别为96%和80%。单个条目的重测信度介于一般到近乎完美之间（加权科恩kappa系数为0.39 - 0.81）。未满足的需求可分为五个内部一致的领域（克朗巴哈系数为0.83 - 0.74）：神经心理、行走、身体、人际关系和信息。与MSIS-29（r = 0.705，p <.001）和EQ-5D-3L（r = 0.617，p <.001）的同时效度良好。
LUN-MS是一种可靠、有效且可接受的工具，用于识别pwMS未满足的需求。
