The feasibility of collecting information from people with Multiple Sclerosis for the UK MS Register via a web portal: characterising a cohort of people with MS

Abstract

Background: A UK Register of people with Multiple Sclerosis has been developed to address the need for an increased knowledge-base about MS. The Register is being populated via: a web-based portal; NHS neurology clinical systems; and administrative data sources. The data are de-identified and linked at the individual level. At the outset, it was not known whether people with MS would wish to participate in the UK MS Register by personally contributing their data to the Register via a web-based system. Therefore, the research aim of this work was to build an internet-mounted recruitment and consenting technology for people with Multiple Sclerosis, and to assess its feasibility as a questionnaire delivery platform to contribute data to the UK MS Register, by determining whether the information provided could be used to describe a cohort of people with MS.

Methods: The web portal was developed using VB.net and JQuery with a Microsoft SQL 2008 database. UK adults with MS can self-register and enter data about themselves by completing validated questionnaires. Descriptive statistics were used to characterise the respondents.

Results: The web portal was launched in May 2011, and in first three months 7,279 individuals registered on the portal. The ratio of men to women was 1:2.4 (n = 5,899), the mean self-reported age at first symptoms was 33.8 (SD 10.5) years, and at diagnosis 39.6 (SD 10.3) years (n = 4,401). The reported types of MS were: 15% primary progressive, 63% relapsing-remitting, 8% secondary progressive, and 14% unknown (n = 5,400). These characteristics are similar to those of the prevalent MS population. Employment rates, sickness/disability rates, ethnicity and educational qualifications were compared with the general UK population. Information about the respondents' experience of early symptoms and the process of diagnosis, plus living arrangements are also reported.

Conclusions: These initial findings from the MS Register portal demonstrate the feasibility of collecting data about people with MS via a web platform, and show that sufficient information can be gathered to characterise a cohort of people with MS. The innovative design of the UK MS register, bringing together three disparate sources of data, is creating a rich resource for research into this condition.

Figure 1

The distribution of types of MS by gender. People with MS provided information on the type of MS they have been diagnosed with. The proportions are indicated here, grouped by gender.

Figure 2

Initial symptoms experienced by people with MS. People with MS were asked to indicate whether they experienced numbness, difficulty walking or problems with their vision, or combinations of these symptoms, among their initial symptoms of MS.

Figure 3

Highest educational attainment reported by people with MS. People with MS provided information about their highest educational attainments.

Figure 4

Employment rates by time since diagnosis. Proportional rates of employment for people with MS of working age were assessed against the duration of the MS diagnosis in 5 year bands.

Figure 5

Rates of sickness/disability status by time since diagnosis. This shows the cumulative percentage of people with MS of working age reporting their status as sick/disabled by length of diagnosis (in 5 year bands).