scholarly journals Pre-existing anxiety, depression, and neurological disability are associated with long COVID: A prospective and longitudinal cohort study of the United Kingdom Multiple Sclerosis Register

2021 ◽  
Author(s):  
Afagh Garjani ◽  
Rodden M Middleton ◽  
Richard Nicholas ◽  
Nikos Evangelou
Keyword(s):  
Multiple Sclerosis ◽  
United Kingdom ◽  
Physical Disability ◽  
Mental Health Problems ◽  
Cox Regression ◽  
Depression Scale ◽  
Symptom Duration ◽  
Cox Regression Analysis ◽  
The United Kingdom ◽  
Recovery Status

Objectives: To assess the prevalence of and factors associated with developing long COVID among patients with multiple sclerosis (MS), a condition which shares the neurological and psychological symptomatology of long COVID Design: Community-based prospective and longitudinal observational study Setting: The United Kingdom (UK) MS Register (UKMSR) COVID-19 study Participants: A national cohort of MS patients with COVID-19 Main outcome measures: Participants used the online questionnaire-based platform of the UKMSR to update their COVID-19 symptoms and recovery status. Questionnaires were date-stamped for estimation of COVID-19 symptom duration. The UKMSR also holds demographic and up-to-date clinical data on participants including comorbidities, MS type, date of MS diagnosis, disease-modifying therapies, web-based Expanded Disability Status Scale scores (a measure of physical disability in MS), and Hospital Anxiety and Depression Scale. The association between these factors and recovery from COVID-19 was assessed using multivariable Cox regression analysis. Results: Out of 7,977 MS patients who participated in the UKMSR COVID-19 study, 599 had COVID-19 and updated their recovery status prospectively. At least 181 participants (31.1%) had long-standing COVID-19 symptoms for ≥4 weeks and 76 (13.1 %) for ≥12 weeks. Participants with higher levels of pre-COVID-19 physical disability, participants with anxiety and/or depression prior to COVID-19 onset, and women were less likely to recover from COVID-19. Conclusions: Long COVID appears to affect patients with a pre-existing chronic condition, especially those with physical disabilities or mental health problems disproportionately when compared to reports in the general population. Long COVID research and the development of post-COVID-19 rehabilitation services need to be inclusive of these at-risk populations. Trial Registration: ClinicalTrials.gov: NCT04354519

scholarly journals Recovery From COVID-19 in Multiple Sclerosis

2021 ◽  
Vol 9 (1) ◽  
pp. e1118
Author(s):  
Afagh Garjani ◽  
Rodden M. Middleton ◽  
Richard Nicholas ◽  
Nikos Evangelou
Keyword(s):  
Mental Health ◽  
Multiple Sclerosis ◽  
Mental Health Problems ◽  
Cox Regression ◽  
Depression Scale ◽  
Symptom Duration ◽  
Physical And Mental Health ◽  
Duration Of Symptoms ◽  
Cox Regression Analysis ◽  
Recovery Status

Background and ObjectivesTo understand the course of recovery from coronavirus disease 2019 (COVID-19) among patients with multiple sclerosis (MS) and to determine its predictors, including patients' pre–COVID-19 physical and mental health status.MethodsThis prospective and longitudinal cohort study recruited patients with MS who reported COVID-19 from March 17, 2020, to March 19, 2021, as part of the United Kingdom MS Register (UKMSR) COVID-19 study. Participants used online questionnaires to regularly update their COVID-19 symptoms, recovery status, and duration of symptoms for those who fully recovered. Questionnaires were date stamped for estimation of COVID-19 symptom duration for those who had not recovered at their last follow-up. The UKMSR holds demographic and up-to-date clinical data on participants as well as their web-based Expanded Disability Status Scale (web-EDSS) and Hospital Anxiety and Depression Scale (HADS) scores. The association between these factors and recovery from COVID-19 was assessed using multivariable Cox regression analysis.ResultsOf the 7,977 patients with MS who participated in the UKMSR COVID-19 study, 599 reported COVID-19 and prospectively updated their recovery status. Twenty-eight hospitalized participants were excluded. At least 165 participants (29.7%) had long-standing COVID-19 symptoms for ≥4 weeks and 69 (12.4%) for ≥12 weeks. Participants with pre–COVID-19 web-EDSS scores ≥7, participants with probable anxiety and/or depression (HADS scores ≥11) before COVID-19 onset, and women were less likely to report recovery from COVID-19.DiscussionPatients with MS are affected by postacute sequelae of COVID-19. Preexisting severe neurologic impairment or mental health problems appear to increase this risk. These findings can have implications in tailoring their post–COVID-19 rehabilitation.

scholarly journals Impact of Asian and black donor and recipient ethnicity on the outcomes after deceased donor kidney transplantation in the United Kingdom

2021 ◽  
Author(s):  
Abdul Rahman Hakeem ◽  
Sonal Asthana ◽  
Rachel Johnson ◽  
Chloe Brown ◽  
Niaz Ahmad
Keyword(s):  
United Kingdom ◽  
Graft Survival ◽  
Blood Group ◽  
Cox Regression ◽  
Deceased Donor ◽  
Donor Kidney ◽  
Donor Pool ◽  
Cox Regression Analysis ◽  
The United Kingdom ◽  
Deceased Donor Kidney

Background: Patients of Asian and black ethnicity face disadvantage on the renal transplant waiting list in the United Kingdom, because of lack of HLA and blood group matched donors from an overwhelmingly white deceased donor pool. This study evaluates outcomes of renal allografts arising from Asian and black donors. Methods: The UK Transplant Registry was analysed for adult deceased donor kidney only transplants performed during January 2001 to December 2015. Results: Asian and black ethnicity patients constituted 12.4% and 6.7% of all deceased donor recipients but only 1.6% and 1.2% of all deceased donors, respectively. Across all recipients, and unsurprisingly given the predominantly white recipient pool, HLA matching was superior for grafts from white donors than from Asian and black donors (p less than 0.0001). Unadjusted survival analysis demonstrated significantly inferior long-term allograft outcomes associated with Asian and black donors, compared to white donors (7 year graft survival 71.9%, 74.0% and 80.5%; log rank p 0.0007, respectively). On Cox regression analysis, Asian donor (HR 1.37 for Asian donors vs. white donors as baseline) and black recipient (HR 1.21 for black recipients vs. white recipient as baseline) ethnicities were associated with poorer outcomes than white counterparts, and on ethnicity matching, compared with the white donor to white recipient baseline group and adjusting for other donor and recipient factors, 5 year graft outcomes were significantly poorer for black donor to black (HR 1.92 (1.11 to 3.32), p 0.02), Asian donor to white recipient (HR 1.56 (1.09 to 2.24), p 0.016) and white donor-black recipient (HR 1.22 (1.05 to 1.42), p 0.011) combinations in decreasing order of worse unadjusted 5 year graft survival. Conclusions: Increased deceased donation among ethnic minority communities would benefit the entire recipient pool by increasing the numbers of available organs and may specifically benefit the Asian and black recipients by increasing the numbers of blood group and HLA compatible grafts for allocation but may not improve allograft outcomes.

Cognitive impairment predicts conversion to multiple sclerosis in clinically isolated syndromes

2009 ◽  
Vol 16 (1) ◽  
pp. 62-67 ◽  
Author(s):  
Valentina Zipoli ◽  
Benedetta Goretti ◽  
Bahia Hakiki ◽  
Gianfranco Siracusa ◽  
Sandro Sorbi ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Cognitive Impairment ◽  
Prognostic Value ◽  
Cox Regression ◽  
Cox Regression Analysis ◽  
Clinically Isolated Syndromes ◽  
Kaplan Meier ◽  
Sizable Proportion ◽  
One Year ◽  
Therapeutic Decision Making

Significant cognitive impairment has been found in 20—30% of patients with clinically isolated syndromes suggestive of multiple sclerosis. In this study we aimed to assess the prognostic value of the presence of cognitive impairment for the conversion to multiple sclerosis in patients with clinically isolated syndromes. All patients with clinically isolated syndromes consecutively referred to our centre since 2002 and who had been followed-up for at least one year underwent cognitive assessment through the Rao’s Battery and the Stroop test. Possible predictors of conversion to clinically definite multiple sclerosis were evaluated through the Kaplan Meier curves and Cox regression analysis. A total of 56 patients (41 women; age 33.2 ± 8.5 years; expanded disability scale score 1.2 ± 0.7) were recruited. At baseline, 32 patients (57%) fulfilled McDonald’s criteria for dissemination in space. During the follow-up (3.5 ± 2.3 years), 26 patients (46%) converted to a diagnosis of multiple sclerosis. In particular, 64% of patients failing ≥ 2 tests and 88% of patients failing ≥ 3 tests converted to multiple sclerosis. In the Cox regression model, the failure of at least three tests (HR 3.3; 95% CI 1.4—8.1; p = 0.003) and the presence of McDonald’s dissemination in space at baseline (HR 3.8; 95% CI 1.5—9.7; p = 0.005), were found to be predictors for conversion to multiple sclerosis. We conclude that cognitive impairment is detectable in a sizable proportion of patients with clinically isolated syndromes. In these subjects cognitive impairment has a prognostic value in predicting conversion to multiple sclerosis and may therefore play a role in therapeutic decision making.

scholarly journals Impact of Proactive Case Management by Multiple Sclerosis Specialist Nurses on Use of Unscheduled Care and Emergency Presentation in Multiple Sclerosis

2015 ◽  
Vol 17 (4) ◽  
pp. 159-163 ◽  
Author(s):  
Alison Leary ◽  
Debbie Quinn ◽  
Amy Bowen
Keyword(s):  
Multiple Sclerosis ◽  
United Kingdom ◽  
Hospital Admissions ◽  
Care Pathway ◽  
Care Center ◽  
Emergency Presentation ◽  
The United Kingdom ◽  
Proactive Management ◽  
Bed Days ◽  
The Impact

Background: Multiple sclerosis (MS) affects approximately 100,000 people in the United Kingdom, with rising emergency admissions to the hospital. The multiple sclerosis specialist nurse plays a pivotal role in managing MS care in the United Kingdom, and there is anecdotal evidence that this role can help avoid emergency presentations and unnecessary hospital admissions. Methods: A retrospective service evaluation took place in one established MS nursing service. The impact of the introduction of proactive nurse-led management and a rapid response service on rates of emergency presentation, hospital admission, and bed use was examined. The primary intervention was the introduction of extra nursing hours (6 hours per week) and the reallocation of some routine administrative duties, which allowed the service to move to a proactive management model aimed at avoiding the need for unplanned care. In addition, a care pathway was implemented in the emergency department for patients with MS who did present. Results: Reduction in utilization was from a mean of 2700 bed-days per year (2002–2006) to a mean of 198 bed-days per year (2007–2013). Conclusions: During a 10-year period, moving from reactive management to proactive management demonstrated an increase in complex specialist nursing interventions and led to a decrease in emergency presentation and bed use at the local acute-care center.

Cesarean section and offspring’s risk of multiple sclerosis: a Danish nationwide cohort study

2013 ◽  
Vol 19 (11) ◽  
pp. 1473-1477 ◽  
Author(s):  
Nete M Nielsen ◽  
Peter Bager ◽  
Egon Stenager ◽  
Bo V Pedersen ◽  
Nils Koch-Henriksen ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Cesarean Section ◽  
Cox Regression ◽  
Mode Of Delivery ◽  
Study Cohort ◽  
Cox Regression Analysis ◽  
Medical Birth Register ◽  
Increased Risk ◽  
Rate Ratios ◽  
Log Linear

Background: Apart from a recent study reporting a 2- to 3-fold increased risk of multiple sclerosis (MS) among women and men who were delivered by Cesarean section (C-section), little attention has been given to the possible association between mode of delivery and the risk of MS. Objectives: We studied the association between C-section and risk of MS, in a cohort of 1.7 million Danes born from 1973 to 2005. Methods: Information on C-section and MS was obtained from the Danish Medical Birth Register and the Danish MS Register, respectively. The association between C-section and MS was evaluated by means of MS incidence rate ratios (RR) with 95% confidence intervals (CI) obtained in log-linear Poisson regression analyses. Results: There were 930 cases of MS in the study cohort, of whom 80 (9%) were delivered by C-section. Overall, we found there was no significant association between C-section and risk of MS (RR = 1.17; 0.92–1.46). Analyses stratified by sex revealed no unusual risk of MS for women (RR = 1.08: 0.80–1.42) nor men (RR = 1.37: 0.91–1.98). A supplementary sibling-matched Cox regression analysis likewise suggested there was no excess risk of MS in persons delivered by C-section (HR = 1.03; 0.63–1.69). Conclusions: Mode of delivery appears to be unimportant in relation to MS development in the offspring.

scholarly journals Personal and societal costs of multiple sclerosis in the UK: A population-based MS Registry study

2020 ◽  
Vol 6 (1) ◽  
pp. 205521732090172 ◽  
Author(s):  
Richard S Nicholas ◽  
Martin L Heaven ◽  
Rodden M Middleton ◽  
Manoj Chevli ◽  
Ruth Pulikottil-Jacob ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
United Kingdom ◽  
Disease Severity ◽  
Medical Costs ◽  
Medical Interventions ◽  
The United Kingdom ◽  
Status Score ◽  
Impact Scale ◽  
Patient Reported ◽  
Disability Status

Objectives To investigate through survey and data linkage, healthcare resource use and costs (except drugs), including who bears the cost, of multiple sclerosis in the United Kingdom by disease severity and type. Methods The United Kingdom Multiple Sclerosis Register deployed a cost of illness survey, completed by people with multiple sclerosis and linked this with data within the United Kingdom Multiple Sclerosis Register and from their hospital records. Resource consumption was categorised as being medical or non-medical and costed by National Health Service and social services estimates for 2018. Results We calculated £509,003 in non-medical costs over a year and £435,488 in medical costs generated over 3 months. People with multiple sclerosis reported self-funding 75% of non-medical costs with non-medical interventions having long-term potential benefits. Costs increased with disability as measured by patient-reported Expanded Disability Status Score and Multiple Sclerosis Impact Scale, with Multiple Sclerosis Impact Scale physical being a more powerful predictor of costs than the patient-reported Expanded Disability Status Score. Two distinct groups were identified: medical and non-medical interventions ( n = 138); and medical interventions only ( n = 399). The medical and non-medical group reported increased disease severity and reduced employment but incurred 80% more medical costs per person than the medical-only group. Conclusions The importance of disability in driving costs is illustrated with balance between medical and non-medical costs consistent with the United Kingdom health environment. People with multiple sclerosis and their families fund a considerable proportion of non-medical costs but non-medical interventions with longer term impact could affect future medical costs.

scholarly journals Summarizing Patient Preferences for the Competitive Landscape of Multiple Sclerosis Treatment Options

2020 ◽  
Vol 40 (2) ◽  
pp. 198-211 ◽  
Author(s):  
Marcel F. Jonker ◽  
Bas Donkers ◽  
Lucas M.A. Goossens ◽  
Renske J. Hoefman ◽  
Lea J. Jabbarian ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
United Kingdom ◽  
Patient Preferences ◽  
Treatment Options ◽  
Mixed Logit ◽  
Principal Component ◽  
Choice Data ◽  
Individual Level ◽  
The United Kingdom ◽  
The Impact

Objective. Quantitatively summarize patient preferences for European licensed relapsing-remitting multiple sclerosis (RRMS) disease-modifying treatment (DMT) options. Methods. To identify and summarize the most important RRMS DMT characteristics, a literature review, exploratory physician interviews, patient focus groups, and confirmatory physician interviews were conducted in Germany, the United Kingdom, and the Netherlands. A discrete choice experiment (DCE) was developed and executed to measure patient preferences for the most important DMT characteristics. The resulting DCE data ( n=799 and n=363 respondents in the United Kingdom and Germany, respectively) were analyzed using Bayesian mixed logit models. The estimated individual-level patient preferences were subsequently summarized using 3 additional analyses: the quality of the choice data was assessed using individual-level R2 estimates, individual-level preferences for the available DMTs were aggregated into DMT-specific preference shares, and a principal component analysis was performed to explain the patients’ choice process. Results. DMT usage differed between RRMS patients in Germany and the United Kingdom but aggregate patient preferences were similar. Across countries, 42% of all patients preferred oral medications, 38% infusions, 16% injections, and 4% no DMT. The most often preferred DMT was natalizumab (26%) and oral DMT cladribine tablets (22%). The least often preferred were mitoxantrone and the beta-interferon injections (1%–3%). Patient preferences were strongly correlated with patients’ MS disease duration and DMT experience, and differences in patient preferences could be summarized using 8 principle components that together explain 99% of the variation in patients’ DMT preferences. Conclusion. This study summarizes patient preferences for the included DMTs, facilitates shared decision making along the dimensions that are relevant to RRMS patients, and introduces methods in the medical DCE literature that are ideally suited to summarize the impact of DMT introductions in preexisting treatment landscapes.

Costs and quality of life of multiple sclerosis in the United Kingdom

2006 ◽  
Vol 7 (S02) ◽  
pp. 96-104 ◽  
Author(s):  
Gisela Kobelt ◽  
Jenny Berg ◽  
P. Lindgren ◽  
J. Kerrigan ◽  
N. Russell ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
United Kingdom ◽  
The United Kingdom

Mental health services for black and minority ethnic elders in the United Kingdom: a systematic review of innovative practice with service provision and policy implications

2012 ◽  
Vol 25 (3) ◽  
pp. 359-373 ◽  
Author(s):  
Sarmishtha Bhattacharyya ◽  
Susan Mary Benbow
Keyword(s):  
Mental Health ◽  
United Kingdom ◽  
Mental Health Problems ◽  
Policy Implications ◽  
The United Kingdom ◽  
Specialist Services ◽  
The Uk ◽  
Socially Excluded ◽  
Minority Ethnic ◽  
Learning Points

ABSTRACTBackground: The proportion of older people from black and minority ethnic (BME) groups in the United Kingdom (UK) is increasing steadily as the population ages. The numbers with dementia, depression, and other mental health problems are predicted to increase. Government policy documents have highlighted gaps in services for BME elders and/or the need to develop culturally appropriate services, in order to prevent people from BME communities from becoming socially excluded and finding services hard to access. This paper reviews published examples of innovative services and key learning points from them.Method: A search was carried out on Pubmed, Medline, and Google Scholar for service developments aimed at BME elders in the UK. Sixteen relevant papers and reports were identified and were analysed to identify learning points and implications for clinical practice and policy.Results: Commissioning issues included were forward planning for continuing funding and mainstreaming versus specialist services. Provider management issues included were employing staff from the communities of interest, partnership, and removing language barriers. Provider service issues included were education for service provider staff on the needs of BME elders, making available information in relevant languages, building on carers’ and users’ experiences, and addressing the needs of both groups.Conclusion: A model for structuring understanding of the underutilisation of services by BME elders is suggested. The main emphasis in future should be to ensure that learning is shared, disseminated, and applied to the benefit of all communities across the whole of the UK and elsewhere. Person-centred care is beneficial to all service users.

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