scholarly journals The Burden of Illness in Patients with Familial Chylomicronemia Syndrome (FCS) in the United Kingdom

2019 ◽  
Author(s):  
Handrean Soran ◽  
Michael Stevenson ◽  
Brant Hubbard ◽  
Richard Jones ◽  
Basil Issa

Abstract Background: Familial chylomicronemia syndrome (FCS) is a rare genetic disorder associated with a deficiency in lipoprotein lipase activity, which is characterized by severe hypertriglyceridemia, recurrent abdominal pain and episodes of acute pancreatitis. Investigation of Findings and Observations Captured in Burden of Illness Survey in FCS Patients (IN-FOCUS) assessed the impact of FCS on patient quality of life (QoL) and quantified the burden of illness attributable to FCS for 166 patients in 10 countries. Given the lack of data to support value-based treatment of FCS in the United Kingdom (UK), a prespecified sub analysis of respondents from the UK was performed to evaluate country-specific experiences for patients with FCS and any associated outcomes. Methods: A web-based survey captured information on diagnostic experience, symptoms, comorbidities, disease management, and impact on multiple life dimensions from adults living with FCS. Results: Twenty respondents from the UK completed the survey. Three-quarters indicated that FCS limits their life and significant time and energy is required to manage their FCS. Respondents reported moderate physical symptoms 1–3 times every 2 weeks, all respondents reported worrying about their FCS getting worse with age and 85% worrying about the long-term impact of FCS on their health. Only 3 respondents (15%) reported working full-time,53% of respondents reported that their diminished employment was largely or entirely due to FCS. Furthermore, 90% of respondents reported restricting their dietary fat consumption to an extreme degree and 75% reported using fasting to help manage the symptoms of FCS, suggesting a level of overcompensation. Only one of five women reported a pregnancy. The UK data was largely consistent with the overall study, except for an increased prevalence of worry and differences in disease management. Conclusions: FCS is associated with an ongoing physical and emotional burden that negatively impacts QoL for patients in the UK. Attempts to self-manage FCS may increase the burden of disease. Results from the UK sub analysis are consistent with the overall cohort of IN-FOCUS in suggesting that increased disease awareness and improved management strategies for FCS are required.

2021 ◽  
Author(s):  
Alex de Figueiredo ◽  
Heidi J Larson ◽  
Stephen D Reicher

Background: Four vaccines against the novel coronavirus 2019 disease (COVID-19) caused by the severe acute respiratory coronavirus 2 (SARS-CoV-2) have currently been approved for use in the United Kingdom. As of 30 April 2021, over 34 million adults have received at least one dose of a COVID-19 vaccine. The UK Government is considering the introduction of vaccine passports for domestic use and to facilitate international travel for UK residents. Although vaccine incentivisation has been cited as a motivating factor for vaccine passports, it is currently unclear whether vaccine passports are likely to increase inclination to accept a COVID-19 vaccine. Methods: We conducted a large-scale national survey in the UK of 17,611 adults between 9 and 27 April 2021. Bayesian multilevel regression and poststratification is used to provide unbiased national-level estimates of the impact of the introduction of vaccine passports on inclination to accept COVID-19 vaccines among all respondents who have not yet had two vaccination doses. Multilevel regressions identify the differential impact of the likely impact of vaccine passports on uptake intent between socio-demographic groups. Gibbs sampling was used for Bayesian model inference, with 95% highest posterior density intervals used to capture uncertainty in all parameter estimates. Findings: We find that the introduction of vaccine passports will likely lower inclination to accept a COVID-19 vaccine once baseline vaccination intent has been adjusted for. Notably, this decrease is larger if passports were required for domestic use rather than for facilitating international travel. The impact of passports while controlling for baseline vaccination intent differentially impacts individuals by socio-demographic status, with being male (OR 0.87, 0.76 to 0.99) and having degree qualifications (OR 0.84, 0.72 to 0.94) associated with a decreased inclination to vaccinate if passports were required for domestic use, while Christians (OR 1.23, 1.08 to 1.41) have an increased inclination over atheists or agnostics. There is a strong association between change in vaccination inclination if passports were introduced and baseline vaccination intent: stated change in vaccination inclination is thus lower among Black or Black British respondents (compared to Whites), younger age groups, and non-English speakers. We find notable sub-national trends, for example, that passports could increase inclination among students and Jewish respondents in London compared to those in full-time education or atheists or agnostics, respectively. Interpretation: To our knowledge, this is the first quantitative assessment of the potential impact of the introduction of vaccine passports on COVID-19 vaccine intention. Our findings should be interpreted in light of sub-national trends in current uptake rates across the UK, as our results suggest that vaccine passports may induce a lower vaccination inclination in socio-demographic groups that cluster geographically in large urban areas. Caution should therefore be exercised in introducing passports as they may result in less positive health-seeking behaviours for the COVID-19 vaccine (as well as other existing or future vaccinations) and may contribute to concentrated areas of low vaccinate uptake, which is an epidemic risk. We call for further evidence on the impact of vaccine certification on confidence in COVID-19 vaccines and in routine immunisations in wider global settings and, in particular, in countries with low overall trust in vaccinations or in authorities that administer or recommend vaccines.


2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Harry E. R. Shepherd ◽  
Florence S. Atherden ◽  
Ho Man Theophilus Chan ◽  
Alexandra Loveridge ◽  
Andrew J. Tatem

Abstract Background Since early March 2020, the COVID-19 epidemic across the United Kingdom has led to a range of social distancing policies, which resulted in changes to mobility across different regions. An understanding of how these policies impacted travel patterns over time and at different spatial scales is important for designing effective strategies, future pandemic planning and in providing broader insights on the population geography of the country. Crowd level data on mobile phone usage can be used as a proxy for population mobility patterns and provide a way of quantifying in near-real time the impact of social distancing measures on changes in mobility. Methods Here we explore patterns of change in densities, domestic and international flows and co-location of Facebook users in the UK from March 2020 to March 2021. Results We find substantial heterogeneities across time and region, with large changes observed compared to pre-pademic patterns. The impacts of periods of lockdown on distances travelled and flow volumes are evident, with each showing variations, but some significant reductions in co-location rates. Clear differences in multiple metrics of mobility are seen in central London compared to the rest of the UK, with each of Scotland, Wales and Northern Ireland showing significant deviations from England at times. Moreover, the impacts of rapid changes in rules on international travel to and from the UK are seen in substantial fluctuations in traveller volumes by destination. Conclusions While questions remain about the representativeness of the Facebook data, previous studies have shown strong correspondence with census-based data and alternative mobility measures, suggesting that findings here are valuable for guiding strategies.


Subject UK-EU trade talks. Significance The United Kingdom will leave the EU on January 31, 2020, but will abide by EU rules as part of the transition period, which runs to December 31, 2020. During this limited period of time, London and Brussels will seek to negotiate a permanent trading relationship. While the transition deadline can be extended, the UK government has committed not to seek an extension. Impacts The impact of no trade deal or a 'thin' one may force the UK government to increase taxes in order to meet spending pledges. UK financial services will rely on an equivalence deal with the EU; London hopes to agree this by mid-2020. The EU’s future trade policy will focus on having stronger sanction powers as well as legal ones for those that unfairly undercut EU firms.


2020 ◽  
Author(s):  
Madison Milne-Ives ◽  
Ching Lam ◽  
Michelle van Velthoven ◽  
Edward Meinert

BACKGROUND The continuing uncertainty around Brexit has caused concern in the pharmaceutical industry and among health care professionals and patients. The exact consequences of Brexit on the pharmaceutical supply chain in the United Kingdom will depend on whether a deal is reached and what it entails, but it is likely to be affected by the withdrawal of the United Kingdom from the European Union. Regulatory issues and delays in supply have the potential to negatively affect the ability of UK residents to receive an adequate and timely supply of necessary medicines. OBJECTIVE The purpose of this protocol is to provide an overview and critical analysis of current perspectives on the effect of Brexit on the UK pharmaceutical supply chain. METHODS The PRISMA-ScR (Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews) guidelines will be used to structure this protocol. A systematic search of MEDLINE, EMBASE, PsycINFO, Healthcare Management Information Consortium (HMIC), Cochrane, Web of Science, Business Source Complete, EconLit, and Economist Intelligence Unit will be conducted, as well as a Google and Nexis.UK search for grey literature such as reports, opinion pieces, and press releases. Two reviewers will independently screen the titles and abstracts of identified references and select studies according to the eligibility criteria. Any discrepancies will then be discussed and resolved. One reviewer will extract data from the included studies into a standardized form, which will be validated by a second reviewer. Risk of bias will be assessed using the Cochrane Collaboration Risk of Bias tool for any randomized controlled trials; quality will be assessed using the relevant Critical Appraisal Skills Programme (CASP) checklists; and grey literature will be assessed using the Authority, Accuracy, Coverage, Objectivity, Date, Significance (AACODS) checklist. Outcomes include the agreement between sources on the potential, likelihood, and severity of the consequences of Brexit on the UK pharmaceutical supply chain. RESULTS Results will be included in the scoping review, which will be published in 2020. CONCLUSIONS This scoping review will summarize the currently expected consequences of Brexit on the UK pharmaceutical supply chain. INTERNATIONAL REGISTERED REPORT PRR1-10.2196/17684


2021 ◽  
Author(s):  
Owen W Tomlinson ◽  
Zoe L Saynor ◽  
Daniel Stevens ◽  
Don Urquhart ◽  
Craig A Williams

The COVID-19 pandemic has resulted in unprecedent change to clinical practice. As the impact upon delivery of exercise services for people with cystic fibrosis (CF) in the UK was unknown, this was characterised via a national survey. In total, 31 CF centres participated. Principal findings included a significant reduction in exercise testing, and widespread adaptation to deliver exercise training using telehealth methods. Promisingly, 71% stated that they would continue to use virtual methods of engaging patients in future practice. This does, however, highlight a need to develop sustainable and more standardised telehealth services further to manage patients moving forwards.


Author(s):  
Samantha Besson

This chapter examines the reception of the ECHR in the UK and Ireland both before and after incorporation. Both countries incorporated the ECHR using roughly the same model. One might have assumed that the mode of incorporation into a dualist legal order would largely determine outcomes. In Ireland and the UK, however, the impact of acts of incorporation was heavily mediated by pre-existing constitutional structure and practice.


Subject The impact of Brexit on the English-speaking Caribbean. Significance The Caribbean is a region with strong links to the United Kingdom that will be affected significantly by the UK voters' decision to leave the EU ('Brexit'). The region includes sovereign and non-sovereign countries and both groups will be affected, albeit in different ways. Impacts Caribbean concerns will not be a priority for either the United Kingdom or the EU. Uncertainty may further undermine already weak regional economies. CARICOM will need a new trade accord with the United Kingdom, its main export market.


2006 ◽  
Vol 35 ◽  
pp. 255-258
Author(s):  
S. N. Turnbull ◽  
D. M. Abraham

The equine passport legislation is a comparatively new scheme that requires all horses to have a passport by 28th February 2005 (Defra, 2004). The equine passport is thought to have had a major impact on the industry in the United Kingdom, however the extent of this is, as yet, unknown due to the lack of current research. The UK Government hopes that the passport scheme will monitor horses that have been treated with medication and guarantee that they are not slaughtered for human consumption (Frank, 2003, Defra, 2004). Whilst the scheme originated from European food safety legislation (Ellis, 2003), the UK Government believes that there are other benefits attached to the equine passport, such as gaining comprehensive records about the equine population in the UK, which is crucial information required for epidemiological reasons (Mellor et al., 1999). The information will provide a denominator for the assessment of disease rates, and which areas of the country may be under threat.


10.1068/c0338 ◽  
2003 ◽  
Vol 21 (4) ◽  
pp. 493-508 ◽  
Author(s):  
Panikkos Poutziouris ◽  
Francis Chittenden ◽  
Tim Watts ◽  
Khaled Soufani

The purpose of this paper is to report on a comparative study of the impact on the SME economy (fewer than 250 employees) of the UK and US (New York State) tax regimes. This explorative study is part of the ongoing small business taxation research programme undertaken in association with NatWest Bank. The research involves (a) the computation of the tax position of a sample of UK-based small businesses (a self-employed person, a partnership, and a small limited company); (b) the application of the tax regime of New York State to the UK business cases studies; (c) the development of two computer simulation models that estimate the direct tax burden incurred by small businesses in the United Kingdom; and (d) the application of the tax regime of New York State to the UK models. This research forms the basis of a comparative discussion about the business tax regime in the United Kingdom and USA and throws some light on the on-going debate about the development of the tax regimes applicable to small businesses in OECD countries. The paper concludes with a summary of the key findings and policy implications and offers a brief discussion on progress towards tax harmonisation from the small business perspective.


Author(s):  
D L Tolley ◽  
G J Fowler

This paper examines the impact of the Public Utilities Regulatory Policies Act (PURPA) in the United States and the Energy Act 1983 in the United Kingdom on the nature of the purchase tariffs for co-generators and combined heat and power (CHP) plant, and considers the reasons why the prospects for investment by private generators might be enhanced in the United States.


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