Developing the LUNS-MS

• Research type

  Research Study

• Full title

  Developing the LUNS-MS: a questionnaire to identify the unmet needs of people with MS

• IRAS ID

  241772

• Contact name

  Krishnan Padmakumari Sivaraman Nair

• Contact email

  k.nair@sheffield.ac.uk

• Sponsor organisation

  Sheffield Teaching Hospitals NHS FT

• Duration of Study in the UK

  0 years, 6 months, 30 days

• Research summary

  Research Summary

  Background
  People with multiple sclerosis (MS) experience a variety of biopsychosocial problems, many of which remain unmet by the current MS services. Currently there is no tool that can reliably identify patients’ unmet needs.

  Aims
  This study aims to develop a questionnaire to identify patients’ unmet needs, tests it’s validity and reliability and assess the unmet needs of people with MS in the UK and understand how these needs might vary with factors such as geography, demographics and disability.

  Methods
  There will be the following phases:
  1. Phase 1: development of a “LUNS-40”: stakeholder consultation and engagement with the literature to develop a list of unmet needs in MS;
  2. Phase 2: Narrow down the list to the top 20-25 and test the acceptability and content validity using further stakeholder engagement and pwMS attending the Royal Hallamshire Hospital;
  3. Phase 3: Test the reliability and validity of the LUNS-20 MS using patients pwMS attending the Royal Hallamshire Hospital.

  Dissemination
  We will disseminate the results in academic literature, conference presentations and using lay summaries on our website.

  Summary of results

  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, 4 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, 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 point-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<0.001) and EQ-5D-3L (r=0.617, p< 0.001) were good.
  Conclusion:
  LUN-MS is a reliable, valid, and acceptable tool to identify the unmet needs of pwMS

• REC name

  North of Scotland Research Ethics Committee 1

• REC reference

  18/NS/0034

• Date of REC Opinion

  20 Mar 2018

• REC opinion

  Favourable Opinion