UK MS Register: MS impact

#MSBlog Web-based MS Register demonstrates the physical and psychological impact of MS

Jones et al. The Physical and Psychological Impact of Multiple Sclerosis Using the MSIS-29 via the Web Portal of the UK MS Register.PLoS One. 2013; 8(1) :e55422.

INTRODUCTION: The MSIS-29 was developed to assess the physical and psychological impact of MS. The aims of this study were to use the responses to the MSIS-29 via the web portal of the UK MS Register to: examine the internal properties of the scale delivered via the internet, profile the cohort, and assess how well the scale measures impact of disability on the potential workforce.

METHODS: Between May 2011 and April 2012, 4558 MSers completed the MSIS-29(v.1). The responses were collated with basic demographic and descriptive MS data and the resulting dataset was analysed in SPSS(v.20).

RESULTS: Internal consistency was high (Cronbach’s alpha 0.97 MSIS-29-PHYS, 0.92 MSIS-29-PSYCH). The mean MSIS-29-PHYS score was 60.5 (50.6%) with a median of 62 and the mean MSIS-29-PSYCH score was 24.8 (43.8%) with a median of 24. Physical scores increased with age and disease duration (p<0.001, p<0.001), but there was a weak negative relationship between psychological scores and age (p<0.001). The odds of people having an employment status of sick/disabled were 7.2 (CI 5.5, 9.4, p<0.001) for people with a moderate physical score, and 22.3 (CI 17.0, 29.3, p<0.001) for people with a high physical score (relative to having a low physical score).

CONCLUSIONS: This largest known study of its kind has demonstrated how the MSIS-29 can be administered via the internet to characterise a cohort of MSers, and to predict the likely impact of disability on taking an active part in the workforce, as a reasonable proxy for the effects of MS on general activities. The findings examining MSIS-29-PHYS and MSIS-29-PSYCH scores against age support the use of two sub-scales, not a combined score. These results underline the importance of using a scale such as this to monitor disability levels regularly in guiding MS care to enable people to be as active as possible.

“The results of this study are both exciting and very sobering. Exciting because it demonstrates that you can measure the impact of MS using a web-tool. Sobering because it shows you how devastating MS is to people living in the UK  and its impact on MSers ability to work. If you have MS and live in the UK you may want to sign-up to the register. It is collecting very useful data and will be an important tool to demonstrate the economic impact of MS on the UK. Well done to the MS Society for supporting the register.”

One thought on “UK MS Register: MS impact”

  1. There is a need for the actual number of people who have MS in the UK to be known and the register has not done that so far. From our limited survey of GPs it would appear that the number is much larger than is regularly quoted by MS sites and Department of Health.

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