BackgroundThe UK MS Register (UKMSR) developed an electronic version the Symbol Digit Modalities Test (SDMT) called the Cognitive Reaction (CoRe) test that has been validated within clinics on tablet ...computers. We developed a new version of the CoRe application (V2) for use on personal devices but also incorporates a range of symbols.AimTo establish the responsiveness to different symbol sets using the CoRe app.MethodsCoRe was adapted for use on Apple devices. Symbols sets were added, including: classic, emoji and pictographs. We recruited MS Register participants, with a link made available to the Apple testflight application.Results191 pwMS downloaded CoRe V2, 185 were linked to UKMSR data: 116 Relapsing, 61 Progressive, 8 unspecified pwMS. 131 used an iPhone and 60 a tablet. 644 tests were completed, with a mean per pwMS 3.05±2.5 (mean±SD). 264 completed the ‘classic’ symbols: answered 42.2±12.8, correct 41.5±13.6; 220 completed ‘emojis’, answered 54.6±16.07, correct 53.8±16.5; 160 completed ‘pictographs’, answered 44.6±14.2, correct 43.6±14.5. Linear regression with correct score as the dependent variable found that Emoji scores were increased by 12.5 10, 15 and scores were decreased -0.5 per year -0.6, -0.4.ConclusionPwMS performed better at a younger age and when using the emoji symbols compared to the classic and pictograph symbols. The basis of this difference requires further investigation.
IntroductionAn algorithmically identified Multiple Sclerosis (MS) population in Wales using a diagnostic method based on McDonald criteria alone had less severe disease compared to those with ...multiple encounters. We investigated the nature of the encounters.MethodMS subjects were identified using two algorithms, ‘Manitoba10’ based on multiple healthcare encounters and based on McDonald criteria minus the Manitoba10 population ‘Not Manitoba10’. Top 10 primary admissions, number of chest infections (ICD10 J00-J06, J09-J18, J20-J22) and UTIs (ICD10 N390) were compared to the general population.Results1,845,360/4,616,124 subjects in the general population had a UTI or chest infection, versus (4,166/5,438) Manitoba10 and (2,346/4,153) Not Manitoba10. Mean UTI and chest infection admissions were significantly higher in Manitoba10 versus the general population (UTI 1.45,p<0.001, Chest 0.79,p<0.001); in Not Manitoba10 only UTI was significant (UTI 0.45,p<0.001, Chest 0.48,p=0.464). Manitoba10 cohort had significantly higher UTI/Chest infection admissions compared to Not Manitoba10 (p<0.001). Of the top 10 primary causes of hospital admission, Manitoba10 features more events related to increasing disability (Holiday relief care, sepsis, pneumonitis), whereas the general population has more frequent admissions for cancer related events and UTIs.DiscussionMS subjects with multiple encounters have more frequent hospital admissions for UTIs and chest infections potentially contributing to more severe disease.
Maternal sun exposure in gestation and throughout the lifetime is necessary for vitamin D synthesis, and living near the sea is a population level index of seafood consumption. The aim of this study ...was to estimate the incidence rate of multiple sclerosis (MS) in Wales and examine its association with sun exposure, coastal living, and latitude. The study used a database of MS hospital visits and admissions in Wales between 2002 and 2013. For the 1,909 lower layer super output areas (LSOAs) in Wales, coastal status, population, longitude/latitude, and average sunshine hours per day were obtained. Age-specific and age-standardised MS incidence were calculated and modelled using Poisson regression. The distribution of births by month was compared between MS cases and the combined England and Wales population. There were 3,557 new MS cases between 2002 and 2013, with an average annual incidence of 8.14 (95% CI: 7.69-8.59) among males and 12.97 (95% CI: 12.44-13.50) among females per 100,000 population. The female-to-male ratio was 1.86:1. For both sexes combined, the average annual incidence rate was 9.10 (95% CI: 8.80-9.40). All figures are age-standardized to the 1976 European standard population. Compared to the combined England and Wales population, more people with MS were born in April, observed-to-expected ratio: 1.21 (95% CI: 1.08-1.36). MS incidence varied directly with latitude and inversely with sunshine hours. Proximity to the coast was associated with lower MS incidence only in easterly areas. This study shows that MS incidence rate in Wales is comparable to the rate in Scotland and is associated with environmental factors that probably represent levels of vitamin D.
UK MS pregnancy register – A growing database Chen, Liu; Helen, Ford; Stella, Hughes ...
Journal of neurology, neurosurgery and psychiatry,
11/2023, Letnik:
94, Številka:
Suppl 1
Journal Article
Recenzirano
IntroductionThe UK MS Pregnancy Register gathers pregnancy data in women with multiple sclerosis (MS) to address research gaps. We present data from >100 participants recruited since initiation in ...2021.MethodsWomen with MS enter data via a dedicated online portal, completing questionnaires at 2 timepoints during pregnancy, and 3- and 12 months post-partum.ResultsOf 131 participants, most were White ethnicity (91%), and had relapsing-remitting MS (94%). 101 (89%) had ever taken DMT. Mean age at diagnosis and registration were 28.6 and 33.1 years respec- tively. Most registered in the first trimester of pregnancy (47.3%, n=62). Median EDSS was 2.5. 18 relapses were recorded in 15 patients; most relapses occurred in late pregnancy and postpartum. 78% discussed pregnancy in advance with their MS team. 86 pregnancies were exposed to DMT (62.3%), most commonly natalizumab (34.9%, n=30), glatiramer acetate (20.9%, n=18), and dimethyl fumarate (12.8%, n=11). 120 participants (91.6%) took supplements during pregnancy. Delivery gestation varied from 38 to 41 weeks, with the majority having delivered at 40 weeks. Postnatally, 58.3% of participants scored >10 on the Edinburgh PND scale.ConclusionSuch data demonstrates feasibility of large-scale, patient-orientated data gathering. Further work is required to improve postpartum data acquisition.
The negative impact of smoking in multiple sclerosis is well established; however, there is much less evidence as to whether smoking cessation is beneficial to progression in multiple sclerosis. ...Adults with multiple sclerosis registered on the United Kingdom Multiple Sclerosis Register (2011-20) formed this retrospective and prospective cohort study. Primary outcomes were changes in three patient-reported outcomes: normalized Multiple Sclerosis Physical Impact Scale (MSIS-29-Phys), normalized Multiple Sclerosis Walking Scale (MSWS-12) and the Hospital Anxiety and Depression Scale (HADS). Time to event outcomes were clinically significant increases in the patient-reported outcomes. The study included 7983 participants; 4130 (51.7%) of these had ever smoked, of whom 1315 (16.5%) were current smokers and 2815/4130 (68.2%) were former smokers. For all patient-reported outcomes, current smokers at the time of completing their first questionnaire had higher patient-reported outcomes scores indicating higher disability compared to those who had never smoked (∼10 points difference in MSIS-29-Phys and MSWS-12; 1.5-1.8 points for HADS-Anxiety and HADS-Depression). There was no improvement in patient-reported outcomes scores with increasing time since quitting in former smokers. Nine hundred and twenty-three participants formed the prospective parallel group, which demonstrated that MSIS-29-Phys median (IQR) 5.03 (3.71, 6.34), MSWS-12 median (IQR) 5.28 (3.62, 6.94) and HADS-Depression median (IQR) 0.71 (0.47, 0.96) scores worsened over a period of 4 years, whereas HADS-Anxiety remained stable. Smoking status was significant at Year 4; current smokers had higher MSIS-29-Phys and HADS-Anxiety scores median (IQR) 3.05 (0.22, 5.88) and 1.14 (0.52, 1.76), respectively while former smokers had a lower MSIS-29-Phys score of -2.91 (-5.03, -0.79). A total of 4642 participants comprised the time to event analysis. Still smoking was associated with a shorter time to worsening event in all patient-reported outcomes (MSIS-29-Phys: n = 4436, P = 0.0013; MSWS-12: n = 3902, P = 0.0061; HADS-Anxiety: n = 4511, P = 0.0017; HADS-Depression: n = 4511, P < 0.0001). Worsening in motor disability (MSIS-29-Phys and MSWS-12) was independent of baseline HADS-Anxiety and HADS-Depression scores. There was no statistically significant difference in the rate of worsening between never and former smokers. When smokers quit, there is a slowing in the rate of motor disability deterioration so that it matches the rate of motor decline in those who have never smoked. This suggests that smoking cessation is beneficial for people with multiple sclerosis.
The association between vitamin D deficiency and multiple sclerosis (MS) is well described. We set out to use remote sampling to ascertain vitamin D status and vitamin D supplementation in a ...cross-sectional study of people with MS across the UK.
People with MS and matched controls were recruited from across the UK. 1768 people with MS enrolled in the study; remote sampling kits were distributed to a subgroup. Dried blood spots (DBS) were used to assess serum 25(OH)D in people with MS and controls.
1768 MS participants completed the questionnaire; 388 MS participants and 309 controls provided biological samples. Serum 25(OH)D was higher in MS than controls (median 71nmol/L vs 49nmol/L). A higher proportion of MS participants than controls supplemented (72% vs 26%, p<0.001); people with MS supplemented at higher vD doses than controls (median 1600 vs 600 IU/day, p<0.001). People with MS who did not supplement had lower serum 25(OH)D levels than non-supplementing controls (median 38 nmol/L vs 44 nmol/L). Participants engaged well with remote sampling.
The UK MS population have higher serum 25(OH)D than controls, mainly as a result of vitamin D supplementation. Remote sampling is a feasible way of carrying out large studies.
Understanding the associations and potential drivers of long-term disability in Multiple Sclerosis (MS) is of clinical and prognostic value. Previous data have suggested a link between depression and ...disability accrual in MS. We aimed to determine whether depression in early MS predicts subsequent accrual of disability. Using data from the UK MS Register, we identified individuals with and without symptoms of depression and anxiety close to disease onset. We used Cox proportional hazards regression to evaluate whether early depressive or anxiety symptoms predict subsequent physical disability worsening, measured using the Expanded Disability Status Scale (EDSS). We analysed data from 862 people with MS of whom 134 (15.5%) reached an EDSS of ≥ 6.0. Early depressive symptoms were associated with an increased risk of reaching an EDSS of 6.0 (HR 2.42, 95% CI 1.49-3.95, p < 0.001), however this effect dissipated when adjusting for baseline EDSS (HR 1.40, 95% CI 0.84-2.32, p = 0.2). These data suggest that early depressive symptoms in MS are associated with subsequent disability accrual, but are likely the result of disability rather than its cause.
ObjectivesTo capture the complexities and unique experience of a newly formed multidisciplinary and multicentre research team developing and deploying a COVID-19 study and to identify lessons ...learnt.DesignCo-autoethnographic study.SettingStaff at two UK academic institutions, a national charity and two major UK hospitals.ParticipantsResearchers, clinicians, academics, statisticians and analysts, patient and public involvement representatives and national charity.MethodsThe sampling frame was any content discussed or shared between research team members (emails, meeting minutes, etc), standard observational dimensions and reflective interviews with team members. Data were thematically analysed.ResultsData from 34 meetings and >50 emails between 17 March and 5 August 2020 were analysed. The analysis yielded seven themes with ‘Managing our stress’ as an overarching theme.ConclusionsMutual respect, flexibility and genuine belief that team members are doing the best they can under the circumstances are essential for completing a time-consuming study, requiring a rapid response during a pandemic. Acknowledging and managing stress and a shared purpose can moderate many barriers, such as the lack of face-to-face interactions, leading to effective team working.
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.
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.
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.
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.
Incorporating cognitive testing into routine clinical practice is a challenge in multiple sclerosis (MS), given the wide spectrum of both cognitive and physical impairments people can have and the ...time that testing requires. Shortened paper and verbal assessments predominate but still are not used routinely. Computer-based tests are becoming more widespread; however, changes in how a paper test is implemented can impact what exactly is being assessed in an individual. The Symbol Digit Modalities Test (SDMT) is one validated test that forms part of the cognitive batteries used in MS and has some computer-based versions. We developed a tablet-based SDMT variant that has the potential to be ultimately deployed to patients' own devices.
This paper aims to develop, validate, and deploy a computer-based SDMT variant, the Cognition Reaction (CoRe) test, that can reliably replicate the characteristics of the paper-based SDMT.
We carried out analysis using Pearson and intraclass correlations, as well as a Bland-Altman comparison, to examine consistency between the SDMT and CoRe tests and for test-retest reliability. The SDMT and CoRe tests were evaluated for sensitivity to disability levels and age. A novel metric in CoRe was found: question answering velocity could be calculated. This was evaluated in relation to disability levels and age for people with MS and compared with a group of healthy control volunteers.
SDMT and CoRe test scores were highly correlated and consistent with 1-month retest values. Lower scores were seen in patients with higher age and some effect was seen with increasing disability. There was no learning effect evident. Question answering velocity demonstrated a small increase in speed over the 90-second duration of the test in people with MS and healthy controls.
This study validates a computer-based alternative to the SDMT that can be used in clinics and beyond. It enables accurate recording of elements of cognition relevant in MS but offers additional metrics that may offer further value to clinicians and people with MS.
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