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.

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.

scholarly journals Clinician views of patient decisional conflict when deciding between dialysis and conservative management: Qualitative findings from the PAlliative Care in chronic Kidney diSease (PACKS) study

2017 ◽  
Vol 31 (10) ◽  
pp. 921-931 ◽  
Author(s):  
Helen Noble ◽  
Kevin Brazil ◽  
Aine Burns ◽  
Sarah Hallahan ◽  
Charles Normand ◽  
...  
Keyword(s):  
Chronic Kidney Disease ◽  
Decision Making ◽  
Palliative Care ◽  
United Kingdom ◽  
Kidney Disease ◽  
Conservative Management ◽  
Treatment Options ◽  
Decisional Conflict ◽  
The United Kingdom ◽  
The Impact

Background: Only a paucity of studies have addressed clinician perspectives on patient decisional conflict, in making complex decisions between dialysis and conservative management (renal supportive and palliative care). Aim: To explore clinician views on decisional conflict in patients with end-stage kidney disease. Design: Interpretive, qualitative study. Setting and participants: As part of the wider National Institute for Health Research, PAlliative Care in chronic Kidney diSease study, semi-structured interviews were conducted with clinicians (nephrologists n = 12; 7 female and clinical nurse specialists n = 15; 15 female) across 10 renal centres in the United Kingdom. Interviews took place between April 2015 and October 2016 and a thematic analysis of the interview data was undertaken. Results: Three major themes with associated subthemes were identified. The first, ‘Frequent changing of mind regarding treatment options’, revealed how patients frequently altered their treatment decisions, some refusing to make a decision until deterioration occurred. The second theme, ‘Obligatory beneficence’, included clinicians helping patients to make informed decisions where outcomes were uncertain. In weighing up risks and benefits, and the impact on patients, clinicians sometimes withheld information they thought might cause concern. Finally, ‘Intricacy of the decision’ uncovered clinicians’ views on the momentous and brave decision to be made. They also acknowledged the risks associated with this complex decision in giving prognostic information which might be inaccurate. Limitations: Relies on interpretative description which uncovers constructed truths and does not include interviews with patients. Conclusion: Findings identify decisional conflict in patient decision-making and a tension between the prerequisite for shared decision-making and current clinical practice. Clinicians also face conflict when discussing treatment options due to uncertainty in equipoise between treatments and how much information should be shared. The findings are likely to resonate across countries outside the United Kingdom.

scholarly journals The impact of changing cigarette smoking habits and smoke-free legislation on orofacial cleft incidence in the United Kingdom: Evidence from two time-series studies

PLoS ONE ◽  
2021 ◽  
Vol 16 (11) ◽  
pp. e0259820
Author(s):  
Matthew Fell ◽  
Craig Russell ◽  
Jibby Medina ◽  
Toby Gillgrass ◽  
Shaheel Chummun ◽  
...  
Keyword(s):  
Time Series ◽  
Regression Analysis ◽  
United Kingdom ◽  
Northern Ireland ◽  
Cigarette Smoking ◽  
Smoking Prevalence ◽  
Orofacial Cleft ◽  
Individual Level ◽  
The United Kingdom ◽  
The Impact

Background Both active and passive cigarette smoking have previously been associated with orofacial cleft aetiology. We aimed to analyse the impact of declining active smoking prevalence and the implementation of smoke-free legislation on the incidence of children born with a cleft lip and/or palate within the United Kingdom. Methods and findings We conducted regression analysis using national administrative data in the United Kingdom between 2000–2018. The main outcome measure was orofacial cleft incidence, reported annually for England, Wales and Northern Ireland and separately for Scotland. First, we conducted an ecological study with longitudinal time-series analysis using smoking prevalence data for females over 16 years of age. Second, we used a natural experiment design with interrupted time-series analysis to assess the impact of smoke-free legislation. Over the study period, the annual incidence of orofacial cleft per 10,000 live births ranged from 14.2–16.2 in England, Wales and Northern Ireland and 13.4–18.8 in Scotland. The proportion of active smokers amongst females in the United Kingdom declined by 37% during the study period. Adjusted regression analysis did not show a correlation between the proportion of active smokers and orofacial cleft incidence in either dataset, although we were unable to exclude a modest effect of the magnitude seen in individual-level observational studies. The data in England, Wales and Northern Ireland suggested an 8% reduction in orofacial cleft incidence (RR 0.92, 95%CI 0.85 to 0.99; P = 0.024) following the implementation of smoke-free legislation. In Scotland, there was weak evidence for an increase in orofacial cleft incidence following smoke-free legislation (RR 1.16, 95%CI 0.94 to 1.44; P = 0.173). Conclusions These two ecological studies offer a novel insight into the influence of smoking in orofacial cleft aetiology, adding to the evidence base from individual-level studies. Our results suggest that smoke-free legislation may have reduced orofacial cleft incidence in England, Wales and Northern Ireland.

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
Keyword(s):  
Multiple Sclerosis ◽  
United Kingdom ◽  
Treatment Efficacy ◽  
Mixed Logit ◽  
Relative Importance ◽  
Disability Progression ◽  
The United Kingdom ◽  
Injection Site Reactions ◽  
Injection Frequency ◽  
Preference Weights

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.

scholarly journals The impact of changing smoking habits and smoke-free legislation on orofacial cleft incidence in the United Kingdom: evidence from two time-series studies

2021 ◽  
Author(s):  
Matthew John Fell ◽  
Craig Russell ◽  
Jibby Medina ◽  
Toby Gillgrass ◽  
Shaheel Chummun ◽  
...  
Keyword(s):  
Time Series ◽  
United Kingdom ◽  
Northern Ireland ◽  
Cleft Lip ◽  
Interrupted Time Series ◽  
Evidence Base ◽  
Orofacial Cleft ◽  
Individual Level ◽  
The United Kingdom ◽  
The Impact

Objectives: To analyse the association between active and passive cigarette smoking and the incidence of children born with a cleft lip and/or palate within the United Kingdom. Design: First, a longitudinal time-series study was conducted with routinely collected smoking prevalence data for females over 16 years of age. Second, an interrupted time-series design was used as a natural experiment to assess the impact of smoke-free legislation using segmented Poisson regression. Setting: United Kingdom. Population: All children born between 2000 and 2018 and their mothers. Main outcome measures: Orofacial cleft incidence, reported annually for England, Wales and Northern Ireland and separately for Scotland. Results: Over the study period, the annual incidence of orofacial cleft per 10,000 live births ranged from 14.2-16.2 in England, Wales and Northern Ireland and 13.4-18.8 in Scotland. The proportion of active smokers amongst females in the United Kingdom declined by 37% during the study period. Adjusted regression analysis did not show a correlation between the proportion of active smokers and orofacial cleft incidence in either dataset, although we were unable to exclude a modest effect of the magnitude seen in individual-level observational studies. The data in England, Wales and Northern Ireland suggested an 8% reduction in orofacial cleft incidence (95%CI 1% to 14%; P=0.026) following the implementation of smoke-free legislation. In Scotland, there was weak evidence for an increase in orofacial cleft incidence following smoke-free legislation. Conclusion: These two ecological studies offer a novel insight into the influence of smoking in orofacial cleft aetiology, adding to the evidence base from individual-level studies. Our results suggest that smoke-free legislation may have reduced orofacial cleft incidence in England, Wales and Northern Ireland.

Euratom and Brexit: Could the United Kingdom Maintain One Foot in the European Union? Current Scenarios and Future Prospects of British withdrawal from the EAEC

2018 ◽  
Vol 18 (2) ◽  
pp. 134-151
Author(s):  
Andrea Circolo ◽  
Ondrej Hamuľák
Keyword(s):  
European Union ◽  
United Kingdom ◽  
Independent Solution ◽  
Legal Regulation ◽  
The European Union ◽  
The United Kingdom ◽  
The Status ◽  
Long Time ◽  
Energy Community ◽  
The Impact

Abstract The paper focuses on the very topical issue of conclusion of the membership of the State, namely the United Kingdom, in European integration structures. The ques­tion of termination of membership in European Communities and European Union has not been tackled for a long time in the sources of European law. With the adop­tion of the Treaty of Lisbon (2009), the institute of 'unilateral' withdrawal was intro­duced. It´s worth to say that exit clause was intended as symbolic in its nature, in fact underlining the status of Member States as sovereign entities. That is why this institute is very general and the legal regulation of the exercise of withdrawal contains many gaps. One of them is a question of absolute or relative nature of exiting from integration structures. Today’s “exit clause” (Art. 50 of Treaty on European Union) regulates only the termination of membership in the European Union and is silent on the impact of such a step on membership in the European Atomic Energy Community. The presented paper offers an analysis of different variations of the interpretation and solution of the problem. It´s based on the independent solution thesis and therefore rejects an automa­tism approach. The paper and topic is important and original especially because in the multitude of scholarly writings devoted to Brexit questions, vast majority of them deals with institutional questions, the interpretation of Art. 50 of Treaty on European Union; the constitutional matters at national UK level; future relation between EU and UK and political bargaining behind such as all that. The question of impact on withdrawal on Euratom membership is somehow underrepresented. Present paper attempts to fill this gap and accelerate the scholarly debate on this matter globally, because all consequences of Brexit already have and will definitely give rise to more world-wide effects.

Data protection and passenger name record in judicial criminal matters under the EU–UK Trade and Cooperation Agreement

2021 ◽  
pp. 203228442199492
Author(s):  
Catherine Van de Heyning
Keyword(s):  
United Kingdom ◽  
Data Protection ◽  
Personal Data ◽  
Cooperation Agreement ◽  
Judicial Cooperation ◽  
The United Kingdom ◽  
Record Data ◽  
Criminal Matters ◽  
The Impact ◽  
The Eu

The submission discusses the provisions in the EU–UK Trade and Cooperation Agreement on data protection as well as the consequences for the exchange of passenger name record data in the field of criminal and judicial cooperation. The author concludes that the impact of the Agreement will depend on the resolvement of the United Kingdom to uphold the standards of protection of personal data equivalent to the EU’s in order to reach an adequacy decision.

scholarly journals The impact of the COVID-19 pandemic on the mental health of young people: A comparison between China and the United Kingdom

2021 ◽  
Author(s):  
Ming-Bo Liu ◽  
Géraldine Dufour ◽  
Zhuo-Er Sun ◽  
Julieta Galante ◽  
Chen-Qi Xing ◽  
...  
Keyword(s):  
Mental Health ◽  
United Kingdom ◽  
Young People ◽  
The United Kingdom ◽  
The Impact
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