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Background and Objectives: Determining responsiveness of measures across different samples and settings is important for selecting measures of mobility and understanding multiple sclerosis (MS) study results. Currently such information is limited., Methods: This exploratory study examined the relative responsiveness of four mobility measures (walking velocity, 6-minute walk distance, Rivermead Mobility Index and MS Walking Scale) in a community sample (n = 70), after three annual assessments. Distribution based estimates and anchor-based methods (comparison against transition questions) determined responsiveness. A head-to-head comparison was made., Results: While variations in individuals occurred, the group mean change scores for all measures was small, suggesting that there was minimal deterioration in the total sample. Consistent with this, total sample Effect Size (ES) was negligible to small (ES -0.32 to +0.03) for all measures. Differentiation between sub-groups, defined by the participants' perception of change in mobility over the past year (transition questions), showed that some instruments could detect clinically significant changes (small sample sizes limited this interpretation). Correlation analyses between change scores demonstrated that these measures captured related, but different information (r < 0.364)., Conclusions: The measures were broadly comparable in detecting mobility changes in this community sample. These correlations highlight that in selection of measures, one should also consider the discrete mobility dimension that the intervention intends to impact.

Background: Walking impairment has a major influence on the quality of life of people with multiple sclerosis (MS). The Multiple Sclerosis Walking Scale (MSWS-12) assesses the impact of MS on walking ability from the patient's perspective, but in its current form, is not amenable for use in many policy decision-making settings., Objectives: Statistical 'mapping' methods were used to convert MSWS-12 scores to EQ-5D health state values., Methods: The relationship between the measures was estimated using cohort data from people with MS in South West England. Regression analyses were conducted, estimation errors assessed, and predictive performance of the best models tested using longitudinal data., Results: Model performance was in line with that of other mapping studies, with the best-performing models being an ordinary least squares (OLS) model using MSWS-12 item scores, and an OLS model using the total MSWS-12 score and its squared term., Conclusions: A process has been described whereby data from a patient-reported outcome measure (MSWS-12) can be converted to (EQ-5D) health state values. These values may be used to consider the health-related quality of life of people with MS, to estimate quality adjusted life-years for use in effectiveness and cost-effectiveness analyses, and to inform health policy decisions.

Background: Few upper limb functioning patient rating scales have been used in multiple sclerosis (MS) research and none developed specifically for people with MS., Objectives: In this study, we examined the Disabilities of the Arm, Shoulder and Hand (DASH) to determine its utility as a useful, scientifically robust and clinically meaningful tool in MS., Methods: DASH data from 300 people with MS underwent two independent phases of psychometric analyses: (1) a traditional psychometric analysis (including data quality, scaling assumptions, reliability and validity); and (2) a Rasch analysis (including response option thresholds ordering, tests of fit, spread of item locations, residual correlations, and person separation index)., Results: Overall, the traditional psychometric analysis supported the DASH as a reliable and valid measure of upper limb function in people with MS. However, several issues were raised by the Rasch analysis that questioned the validity of the DASH, including misfit in 13/30 items, disordered item response option thresholds for 9/30 items, and six pairs of items with high residual correlations (> 0.60)., Conclusion: Rasch analysis highlights areas for potential improvement for the use of the DASH. Our findings further support our previous arguments that traditional psychometric methods provide weak scale evaluations and can mislead clinicians as to the reliability and validity of outcome measures.

The epidemiology of motor neurone disease (MND) in the counties of Devon and Cornwall in the southwest of England has not previously been studied. A previous study of England and Wales has, however, reported a very high death certification rate of MND in Devon. This study was carried out to establish the prevalence and incidence of MND in Devon and Cornwall and make comparisons with published rates in other populations. We attempted to identify all cases of MND diagnosed in Devon and Cornwall between 2002 and 2007. Case identification was centred on the major hospitals in the two counties and multiple sources of ascertainment were used. All identified cases had their case notes reviewed to establish the diagnosis and classify by type of MND. Point prevalence of MND was established for September 1st, 2007. The overall incidence rate standardised to the 2001 United Kingdom population was 2.52 per 100,000 (95% confidence interval 2.20-2.84). The incidence rate was significantly higher in males (P < 0.001). The estimated male to female incidence ratio was 2.10 (95% CI 1.61-2.73). The crude incidence rate in Cornwall was 3.78 per 100,000 (95% CI 3.03-4.53) and this was significantly higher (P = 0.011) than the rate in Devon, which was 2.61 per 100,000 (95% CI 2.19-3.04). The standardised incidence rate for the study period in Devon was 2.26 per 100,000 (95% CI 1.91-2.60) and in Cornwall it was 3.06 per 100,000 (95% CI 2.44-3.68). The overall standardised point prevalence rate was 5.66 per 100,000 (95% CI 4.49-6.83). The incidence rate of MND in our study is similar to reported findings in large prospective studies of the disease. There is a significant difference between the incidence rates in Devon and Cornwall. There is a need to establish a prospective MND Register to accurately document the epidemiological characteristics of the disease in the two counties.

Objective: To determine the views of people with multiple sclerosis (MS) and professionals in relation to confidentiality, consent and access to data within a proposed MS register in the UK., Design: Qualitative study using focus groups (10) and interviews (13)., Setting: England and Northern Ireland., Participants: 68 people with MS, neurologists, MS nurses, health services management professionals, researchers, representatives from pharmaceutical companies and social care professionals., Results: People with MS expressed open and altruistic views towards the use of their personal information to facilitate service provision and research, placing trust in responsible guardianship and legitimate use of their information. Participant's proposed that people with MS should be able to select their individual level of involvement in a register using levels of consent. It was agreed that access to the register should be governed by a guardianship committee composed of a range of stakeholders. People with MS did not wish their details to be used by marketing agencies and did not consider this a legitimate use of their data. Whilst participants were positive of the role a register could play in promoting research, participants felt that access to data by pharmaceutical industries should be administered by the guardianship committee. People with MS are concerned should their employers be able to access their personal information. Professionals were more cautious than people with MS in their approach to the use of patient personal data within a register., Conclusions: Whilst all stakeholders were positive of the benefits of an MS register, development of such a resource must incorporate robust data security and guardianship measures in order to ensure that, whilst opportunities are maximised, risks to the privacy of individuals and legal challenges to professionals are avoided.

Objectives: To determine the prevalence of multiple sclerosis in Devon and compare the new McDonald classification guidelines with the Poser criteria currently used., Methods: All patients known to have multiple sclerosis and alive and resident within the chosen area on 1 June 2001 were included in the study. Seven sources of case ascertainment were used and each patient was classified according to both the Poser criteria and the McDonald guidelines., Results: The prevalence of multiple sclerosis in Devon was 118 per 100,000 (definite and probable cases, Poser criteria) in a population of 341,796, on the prevalence day. The prevalence of definite and possible cases, as classified by the new McDonald guidelines, was slightly lower at 117 per 100,000. Clinical demographics of the prevalent population were similar to those of other studies in the United Kingdom., Conclusions: This is first survey to use the new recommended guidelines and compare these criteria with the Poser classification. The difficulties encountered with applying the new criteria in research are highlighted, as are the differences between the new and old criteria. This study reports one of the highest prevalences in the south of the UK, adding support for a north-south divide being a step effect rather than a latitudinal gradient.