scholarly journals Access to and Use of Clinical Services and Disease-Modifying Therapies by People with Progressive Multiple Sclerosis in the United Kingdom

2017 ◽  
Vol 19 (6) ◽  
pp. 275-282 ◽  
Author(s):  
Evan Campbell ◽  
Elaine H. Coulter ◽  
Paul Mattison ◽  
Angus McFadyen ◽  
Linda Miller ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Progressive Multiple Sclerosis ◽  
Clinical Services ◽  
The United Kingdom ◽  
Disease Modifying Therapies ◽  
Disease Modifying ◽  
The Uk ◽  
Regular Review

Background: According to current UK guidelines, everyone with progressive multiple sclerosis (MS) should have access to an MS specialist, but levels of access and use of clinical services is unknown. We sought to investigate access to MS specialists and use of clinical services and disease-modifying therapies (DMTs) by people with progressive MS in the United Kingdom. Methods: A UK-wide online survey was conducted via the UK MS Register. The inclusion criteria were age 18 years or older, primary or secondary progressive MS, and a member of the UK MS Register. Participants were asked about access to MS specialists, recent clinical service use, receipt of regular review, and current and previous DMT use. Participant demographic data, quality of life, and disease impact measures were from the UK MS Register. Results: In total, 1298 individuals responded: 7% were currently taking a DMT, 23% had previously taken a DMT, and 95% reported access to an MS specialist. The most used practitioners were MS doctors/nurses (50%), general practitioners (45%), and physiotherapists (40%). Seventy-four percent of participants received a regular review, although 37% received theirs less often than annually. Current DMT use was associated with better quality of life, but past DMT use was associated with poorer quality of life and higher impact of disease. Conclusions: Access to and use of MS specialists was high. However, a gap in service provision was highlighted in both receipt and frequency of regular reviews.

scholarly journals Comparing the Quality of Life among Patients with Relapsing Remitting Multiple Sclerosis in Iraq Using Different Disease Modifying Therapies

2018 ◽  
pp. 102-114
Author(s):  
Ruaa Natiq Yahya ◽  
Ali A.Kasim ◽  
Gheyath A. Al Gawwam
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Sensory Loss ◽  
Unknown Etiology ◽  
Disease Modifying Therapies ◽  
Relapsing Remitting ◽  
Disease Modifying ◽  
Remitting Multiple Sclerosis ◽  
Relapsing Remitting Multiple Sclerosis

Multiple sclerosis (MS) is a chronic, neurodegenerative disease of the central nervous system with unknown etiology mostly affecting young adults with mean age of 30 years, twice as high in women compared to men. The symptoms of MS, such as weakness, sensory loss, and ataxia, which are directly related to demyelination and axonal loss, along with other symptoms such as reactive depression or social isolation, can result in functional limitations, disability and reduced quality of life (QoL).  QoL assessments in patients with a chronic disease may contribute to improving treatment and could even be of prognostic value. The goals  of this study were  to  assess the QoL among  Iraqi patients with relapsing remitting multiple sclerosis(RRMS), using one of three different disease modifying therapies(DMTs) administered orally, subcutaneously, and by slow infusion; namely, fingolimod, IFN?-1b, and natalizumab, respectively. And to assess the role of certain predictors on  QoL. Functional Assessment of Multiple Sclerosis (FAMS) questionnaire version 4 was used to assess QoL. Sociodemographic and clinical characteristics were tested by univariate and multivariate regression analysis to assess the contribution of these predictors to QoL.  No significant differences were found in Symptoms, Thinking/fatigue subscales and FAMS total scores. In conclusions: Iraqi MS patients using IFN?-1b, fingolimod or natalizumab have a comparable low level of QoL. The expanded disability status scale (EDSS) is negatively associated with QoL of MS patients in all of the three therapies, while other predictors such as occupational status, educational status, smoking habit and MS duration have different impact in different treatments.

scholarly journals The impact of symptoms on quality of life before and after diagnosis of coeliac disease: the results from a Polish population survey and comparison with the results from the United Kingdom

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Emilia Majsiak ◽  
Magdalena Choina ◽  
Dominik Golicki ◽  
Alastair M. Gray ◽  
Bożena Cukrowska
Keyword(s):  
Quality Of Life ◽  
United Kingdom ◽  
Coeliac Disease ◽  
Gluten Free Diet ◽  
Gluten Free ◽  
The United Kingdom ◽  
Before And After ◽  
The Mean ◽  
The Uk

Abstract Background Coeliac disease (CD) is characterised by diverse clinical symptoms, which may cause diagnostic problems and reduce the patients’ quality of life. A study conducted in the United Kingdom (UK) revealed that the mean time between the onset of coeliac symptoms and being diagnosed was above 13 years. This study aimed to analyse the diagnostic process of CD in Poland and evaluate the quality of life of patients before and after CD diagnosis. In addition, results were compared to the results of the original study conducted in the UK. Methods The study included 2500 members of the Polish Coeliac Society. The patients were asked to complete a questionnaire containing questions on socio-demographic factors, clinical aspects and quality of life, using the EQ-5D questionnaire. Questionnaires received from 796 respondents were included in the final analysis. Results The most common symptoms reported by respondents were bloating (75%), abdominal pain (72%), chronic fatigue (63%) and anaemia (58%). Anaemia was the most persistent symptom, with mean duration prior to CD diagnosis of 9.2 years, whereas diarrhoea was observed for the shortest period (4.7 years). The mean duration of any symptom before CD diagnosis was 7.3 years, compared to 13.2 years in the UK. CD diagnosis and the introduction of a gluten-free diet substantially improved the quality of life in each of the five EQ-5D-5L health dimensions: pain and discomfort, anxiety and depression, usual activities, self-care and mobility (p < 0.001), the EQ-Index by 0.149 (SD 0.23) and the EQ-VAS by 30.4 (SD 28.3) points. Conclusions Duration of symptoms prior to the diagnosis of CD in Poland, although shorter than in the UK, was long with an average of 7.3 years from first CD symptoms. Faster CD diagnosis after the onset of symptoms in Polish respondents may be related to a higher percentage of children in the Polish sample. Introduction of a gluten-free diet improves coeliac patients’ quality of life. These results suggest that doctors should be made more aware of CD and its symptoms across all age groups.

scholarly journals Impact of mass vaccination on SARS-CoV-2 infections among the total multiple sclerosis population receiving immunomodulatory disease-modifying therapies in England

2021 ◽  
Author(s):  
Nikos Evangelou ◽  
Afagh Garjani ◽  
Sameer Patel ◽  
Dhiren Bharkhada ◽  
Waqar Rashid ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
General Population ◽  
Mass Vaccination ◽  
Test Results ◽  
Health Security ◽  
Disease Modifying Therapies ◽  
Multiple Sclerosis Population ◽  
Impaired Immune Response ◽  
Disease Modifying ◽  
The Uk

Abstract This study aimed to understand changes in the risk of SARS-CoV-2 infection among all people with multiple sclerosis (MS) receiving immunomodulatory disease-modifying therapies (DMTs) in England, compared to the general population, following mass vaccination. Longitudinal data collected by the National Health Service (NHS) England on all MS DMT prescriptions and the UK Health Security Agency on all registered SARS-CoV-2 test results were analysed. The incidence rate ratio of SARS-CoV-2 infection among people with MS taking DMTs compared to the general population was calculated before (November 2020-January 2021) and after (July-August 2021) mass vaccination. Risk of SARS-CoV-2 infection among people on ocrelizumab or fingolimod compared to the general population increased following liberalisation of COVID-19 restrictions (during March-July 2021) despite mass vaccination. No changes were found with other DMTs. These findings converge with the impaired immune response to vaccines observed with ocrelizumab and fingolimod.

scholarly journals Onset of secondary progressive multiple sclerosis is not influenced by current relapsing multiple sclerosis therapies

2018 ◽  
Vol 4 (2) ◽  
pp. 205521731878334 ◽  
Author(s):  
Francisco Coret ◽  
Francisco C Pérez-Miralles ◽  
Francisco Gascón ◽  
Carmen Alcalá ◽  
Arantxa Navarré ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Progressive Multiple Sclerosis ◽  
Secondary Progressive Multiple Sclerosis ◽  
Secondary Progressive ◽  
Disease Modifying Therapies ◽  
Relapsing Remitting ◽  
Disease Modifying ◽  
Remitting Multiple Sclerosis ◽  
Multiple Sclerosis Patients ◽  
Relapsing Remitting Multiple Sclerosis

Background Disease-modifying therapies are thought to reduce the conversion rate to secondary progressive multiple sclerosis. Objective To explore the rate, chronology, and contributing factors of conversion to the progressive phase in treated relapsing–remitting multiple sclerosis patients. Methods Our study included 204 patients treated for relapsing–remitting multiple sclerosis between 1995 and 2002, prospectively followed to date. Kaplan–Meier analysis was applied to estimate the time until secondary progressive multiple sclerosis conversion, and multivariate survival analysis with a Cox regression model was used to analyse prognostic factors. Results Relapsing–remitting multiple sclerosis patients were continuously treated for 13 years (SD 4.5); 36.3% converted to secondary progressive multiple sclerosis at a mean age of 42.6 years (SD 10.6), a mean time of 8.2 years (SD 5.2) and an estimated mean time of 17.2 years (range 17.1–18.1). A multifocal relapse, age older than 34 years at disease onset and treatment failure independently predicted conversion to secondary progressive multiple sclerosis but did not influence the time to reach an Expanded Disability Status Scale of 6.0. Conclusions The favourable influence of disease-modifying therapies on long-term disability in relapsing–remitting multiple sclerosis is well established. However, the time to progression onset and the subsequent clinical course in treated patients seem similar to those previously reported in natural history studies. More studies are needed to clarify the effect of disease-modifying therapies once the progressive phase has been reached.

Enhancing quality of life in progressive multiple sclerosis with powered robotic exoskeleton

2020 ◽  
pp. 135245852094308
Author(s):  
Seng Kwee Wee ◽  
Chiu Yi Ho ◽  
Si Lei Tan ◽  
Cheng Hong Ong
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Well Being ◽  
Gait Training ◽  
Self Esteem ◽  
Progressive Multiple Sclerosis ◽  
Robotic Exoskeleton ◽  
Lower Limb Strength ◽  
Training Post

Wearable powered robotic exoskeleton can provide high repetitions and high-intensity gait training. It can promote a sense of well-being when the user is in upright posture to walk around different environment. We present a case of a lady with progressive multiple sclerosis who received 15 sessions of robotic exoskeleton training. Post training, she demonstrated improvement in lower limb strength, sense of well-being and self-esteem that led to improved transfer ability, increased social outings and better quality of life (QOL). Previously, she was depressed and reluctant to go out for social activities. This case suggests the potential of robotic exoskeleton to enhance QOL in people with mobility challenges.

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