scholarly journals PREFERENCES OF PATIENTS WITH MULTIPLE SCLEROSIS FOR ATTRIBUTES OF INJECTABLE MULTIPLE SCLEROSIS TREATMENTS IN THE UNITED KINGDOM AND FRANCE

2018 ◽  
Vol 34 (4) ◽  
pp. 425-433 ◽  
Author(s):  
Christine Poulos ◽  
Elizabeth Kinter ◽  
Johan van Beek ◽  
Katrine Christensen ◽  
Joshua Posner

Objectives:Adherence to injectable disease-modifying treatments in patients with multiple sclerosis (MS) impacts outcomes and can be influenced by perceptions of treatment efficacy, side effects, injection frequency, and the duration of injection. This study aimed to quantify preferences for selected attributes of injectable treatments among individuals with MS in the United Kingdom and France.Methods:Respondents with a self-reported diagnosis of MS completed an online discrete-choice-experiment survey, consisting of a series of treatment-choice questions. Each choice question presented two hypothetical treatments, each with six attributes (years until disability progression, relapses in the next 4 years, injection time, injection frequency, flu-like symptoms (FLS), and injection-site reactions), each with various levels. Mixed-logit regression analysis was used to estimate preference weights for attribute levels and to calculate the relative importance of changes in treatment attributes (vertical distance between preference weights). Minimum acceptable efficacy estimates indicate improvement in efficacy that respondents would require in exchange for worsening injection frequency and FLS.Results:In both countries, 100 respondents completed the survey. In the United Kingdom and France, respectively, improving the time until disability progression from 2 to 4 years, reducing injection frequency from “daily” to “every 2 weeks”, and reducing FLS from 3 days after every injection to none had a relative importance of 2.9 and 2.6, 3.0 and 3.5, and 2.5 and 3.1. Given the ranges included in the study, changes in these attributes were more important than most changes in other attributes assessed.Conclusions:Reductions in the injection frequency of MS treatments and FLS can be as important to patients as improvements in treatment efficacy.

2020 ◽  
Vol 40 (2) ◽  
pp. 198-211 ◽  
Author(s):  
Marcel F. Jonker ◽  
Bas Donkers ◽  
Lucas M.A. Goossens ◽  
Renske J. Hoefman ◽  
Lea J. Jabbarian ◽  
...  

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.


2015 ◽  
Vol 17 (4) ◽  
pp. 159-163 ◽  
Author(s):  
Alison Leary ◽  
Debbie Quinn ◽  
Amy Bowen

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.


2021 ◽  
Author(s):  
Afagh Garjani ◽  
Rodden M Middleton ◽  
Richard Nicholas ◽  
Nikos Evangelou

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


2020 ◽  
Vol 6 (1) ◽  
pp. 205521732090172 ◽  
Author(s):  
Richard S Nicholas ◽  
Martin L Heaven ◽  
Rodden M Middleton ◽  
Manoj Chevli ◽  
Ruth Pulikottil-Jacob ◽  
...  

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.


2008 ◽  
Vol 74 (23) ◽  
pp. 7118-7125 ◽  
Author(s):  
K. J. Bown ◽  
X. Lambin ◽  
G. R. Telford ◽  
N. H. Ogden ◽  
S. Telfer ◽  
...  

ABSTRACT The importance of Ixodes ricinus in the transmission of tick-borne pathogens is well recognized in the United Kingdom and across Europe. However, the role of coexisting Ixodes species, such as the widely distributed species Ixodes trianguliceps, as alternative vectors for these pathogens has received little attention. This study aimed to assess the relative importance of I. ricinus and I. trianguliceps in the transmission of Anaplasma phagocytophilum and Babesia microti among United Kingdom field voles (Microtus agrestis), which serve as reservoir hosts for both pathogens. While all instars of I. trianguliceps feed exclusively on small mammals, I. ricinus adults feed primarily on larger hosts such as deer. The abundance of both tick species and pathogen infection prevalence in field voles were monitored at sites surrounded with fencing that excluded deer and at sites where deer were free to roam. As expected, fencing significantly reduced the larval burden of I. ricinus on field voles and the abundance of questing nymphs, but the larval burden of I. trianguliceps was not significantly affected. The prevalence of A. phagocytophilum and B. microti infections was not significantly affected by the presence of fencing, suggesting that I. trianguliceps is their principal vector. The prevalence of nymphal and adult ticks on field voles was also unaffected, indicating that relatively few non-larval I. ricinus ticks feed upon field voles. This study provides compelling evidence for the importance of I. trianguliceps in maintaining these enzootic tick-borne infections, while highlighting the potential for such infections to escape into alternative hosts via I. ricinus.


2006 ◽  
Vol 7 (S02) ◽  
pp. 96-104 ◽  
Author(s):  
Gisela Kobelt ◽  
Jenny Berg ◽  
P. Lindgren ◽  
J. Kerrigan ◽  
N. Russell ◽  
...  

2005 ◽  
Vol 133 (3) ◽  
pp. 475-483 ◽  
Author(s):  
J. Q. NASH ◽  
S. CHISSEL ◽  
J. JONES ◽  
F. WARBURTON ◽  
N. Q. VERLANDER

The aim of this study was to establish the relative importance of various risk factors for toxoplasmosis in a United Kingdom antenatal population. Toxoplasma immune status was determined by an immunoassay and linked to a questionnaire exploring dietary and environmental exposure to toxoplasmosis. The overall seroprevalence found was 9·1% (172/1897). A significantly higher seroprevalence was associated with rural location of the childhood home, childhood home in Europe excluding the United Kingdom, feeding a dog raw meat and increased age. A non-significant higher prevalence of toxoplasmosis was observed in women who had lived with a cat or kitten as a child. In contrast to recent European studies only weak associations between diet and toxoplasmosis were found. Gardening activity was not associated with seropositivity but a non-significant lower seroprevalence was seen in gardeners who always wore gloves. This study confirms that toxoplasma prevalence in the United Kingdom has continued to decline since the 1960s. The increasing seroprevalence with age found in this study, highlights the continuing need to educate women of childbearing age about the risk factors for toxoplasmosis.


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