scholarly journals OP0276-PARE CREATING POLITICAL LEVERS TO IMPROVE AXIAL SPONDYLOARTHRITIS CARE

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 167.2-168
Author(s):  
J. Hamilton ◽  
D. Webb ◽  
S. Whalley

Background:Research carried out in 2016 by NASS showed that the range and quality of axial spondyloarthritis (axial SpA) services generally offered around the UK were variable 1. The publication by the regulator, the National Institute for Health and Care Excellence (NICE), of a Guideline for Spondyloarthritis (NG65) in 2017 2 and the corresponding Quality Standard (QS170) in 2018 3, for the first time provided national guidance and standards of services that should be available for people with axial SpA. National oversight of the implementation of these however was missing.Objectives:NASS worked with Parliamentarians to establish the All-Party Parliamentary Group for Axial Spondyloarthritis in January 2019. We gave it a very specific objective - to oversee the implementation of NH65 and QS170. The group seeks to improve axial SpA services in England whilst raising awareness of the condition at a parliamentary level, working closely with NASS.Methods:The group is a unique forum in the UK, bringing together patients, clinicians, researchers, policy makers, national bodies and parliamentarians. The group has met five times covering a range of topics including the delay to diagnosis, the uptake of NG65 and hydrotherapy.In 2019 the group carried out a national inquiry into the standards of axial SpA services in the UK, developing a ten-question quality framework, based largely on the NICE Guideline recommendations and Quality Standard. In July 2020 a meeting was convened to discuss the impact of COVID-19 on axial SpA services. The meeting presented research carried out by NASS and M&F Health with patients and clinicians respectively.Results:The results of the national inquiry for England were published in January 2020 4. The inquiry found that large discrepancies remain in the provision of axial SpA services. Only 21% of local commissioning bodies have an inflammatory back pain pathway, and less than half of NHS providers have a specialist axial SpA clinic.The results of COVID survey shows significant impacts on the health of axial SpA patients and on the availability and modality of rheumatology services. The APPG later published a report with a set of recommendations 5, creating minimum service specifications for axial SpA services during crisis periods such as the recent pandemic, as well as service recovery. Comment on this research was also published in The Lancet Rheumatology 6.In September 2020 the work of the APPG led to a debate in Parliament on delayed diagnosis in axial SpA.Discussions on the future of hydrotherapy services has resulted in the mobilisation of stakeholders across condition areas.Conclusion:All All Party Parliamentary Group is already proving to be an effective political lever to improve axial SpA care. It has shown huge variations in the standard of care and provision of services still remain and has brought this to the attention of Parliamentarians, policy makers and clinicians.References:[1]Mohammed H Derakhshan, Himanshu Pathak, Debbie Cook, Sally Dickinson, Stefan Siebert, Karl Gaffney, NASS and BRITSpA investigators, Services for spondyloarthritis: a survey of patients and rheumatologists, Rheumatology, February 2018[2]Spondyloarthritis in over 16s: diagnosis and management (NG65), https://www.nice.org.uk/guidance/ng65, February 2017[3]Spondyloarthritis (QS170), https://www.nice.org.uk/guidance/qs170, June 2018[4]Axial Spondyloarthritis Services in England – A national inquiry, https://nass.co.uk/wp-content/uploads/2020/01/Axial-Spondyloarthritis-Services-in-England-FINAL.pdf, January 2020[5]COVID-19 & Axial SpA: Government Recommendation Paper, https://nass.co.uk/wp-content/uploads/2020/10/APPG-Recommendation-Paper-COVID-19-Axial-SpA-for-website-1.pdf, October 2020[6]Helena Marzo Ortega, Simon Whalley, Jill Hamilton, Dale Webb, COVID-19 in axial spondyloarthritis care provision: helping to straighten the long and winding road, https://www.thelancet.com/journals/lanrhe/article/PIIS2665-9913(20)30413-6/fulltext, 1 December 2020Disclosure of Interests:Jill Hamilton Grant/research support from: Funding was received from Novartis to support APPG 1, 2 and 4, Dale Webb Grant/research support from: Funding was received from Novartis for APPG 1, 2 and 4, Simon Whalley: None declared

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 235.3-236
Author(s):  
D. Webb ◽  
K. Gaffney ◽  
R. Sengupta ◽  
S. S. Zhao ◽  
L. Swingler

Background:In the UK, the average time to diagnosis of axial SpA is 8.5 years (1). There is little evidence this has improved, despite the acceptance of MRI use in diagnosis (2). A recent review identified significant clinical, economic and humanistic burden from delayed diagnosis (3). Urgent action is needed to ensure delayed diagnosis is not normalized.Objectives:We created a proposal for a Gold Standard time to diagnosis for axial SpA and a national implementation plan (4) through consensus development with patients, healthcare professionals and professional bodies.Methods:A.A scoping literature review identifying where delays occur, from first symptom onset to diagnosis by a rheumatologist, and potential solutions. From this, a summary report / draft plan was produced for consultationB.A national consultation survey to elicit views on the proposals from clinicians, healthcare professionals, professional societies and patientsC.Structured feedback to written proposals via e-consultation with clinicians and patientsD.A consensus development workshop to finalise the Gold Standard and implementation plan.Results:The literature review identified four delays:1. People do not know axial SpA may be a cause of their chronic back pain2. Primary care practitioners may not recognise features of axial SpA3. People may be referred to non-rheumatologists who may not recognise axial SpA promptly4. Rheumatology and radiology teams may not optimally request or interpret investigations.202 participants responded to the summary report (74% patients, 21% healthcare professsionals, 5% professional societies). All supported the principles behind the gold standard time to diagnosis. Qualitive analysis confirmed agreement with the proposed solutions, underscoring the importance of education and visibility for axial SpA within primary care and increased public awareness. Additional proposals were suggested, including a tool in primary care to run audits on IT systems.40 clinicians contributed to the e-consultation and 55 clinicians, policy makers, social marketing experts, health journalists and patients attended the consensus workshop. Consensus was reached on a gold standard time to diagnosis of one year, and the principles, key components and phasing of the implemention plan. This included: public awareness about axial SpA symptoms; a primary care clinical champions programme; creating a referral pathway from primary care direct to rheumatology; a secondary care service educational programme.Conclusion:There is consensus from UK axial SpA clinicians, patients and professional societies on the need for a Gold Standard time to diagnosis of axial SpA of one year, so that patients can live happy, healthy and productive lives.References:[1]Hamilton L, Gilbert A, Skerett J, et al. Services for people with ankylosing spondylitis in the UK - a survey of rheumatologists and patients. Rheumatology 2011:50:1991[2]Sykes MP, Doll H, R Sengupta, Gaffney, K. Delay to diagnosis in axial spondyloarthritis: are we improving in the UK? Rheumatology, July 2015[3]Yi E, Ahuja A, Rajput T, et al. Clinical, Economic, and Humanistic Burden Associated With Delayed Diagnosis of Axial Spondyloarthritis: A Systematic Review. Rheumatol Ther. 2020 Mar;7(1):65–87.[4]Webb D, Zhao S, Whalley S, et al. Gold Standard Time to Diagnosis in axial Spondyloarthritis: Consultation Document. 2020, NASS.Disclosure of Interests:Dale Webb Speakers bureau: Janssen, Novartis, Grant/research support from: NASS receives grants from AbbVie, Biogen, Eli Lilly, Novartis and UCB, Karl Gaffney Speakers bureau: Abbvie, Lilly, Novartis, UCB, Consultant of: Abbvie, Celltrion, Lilly, Grant/research support from: Abbvie, Pfizer, Lilly, UCB, Raj Sengupta Speakers bureau: Abbvie, Biogen, Celgene, Novartis, Roche, UCB, Consultant of: Advisory boards for Abbvie, Biogen, Novartis, UCB, Grant/research support from: Abbvie, Celgene, Novartis, Sizheng Steven Zhao: None declared, Lisa Swingler Grant/research support from: NASS receives grants from AbbVie, Biogen, Eli Lilly, Novartis and UCB.


2021 ◽  
pp. 1-21
Author(s):  
JON ORD ◽  
MARC CARLETTI ◽  
DANIELE MORCIANO ◽  
LASSE SIURALA ◽  
CHRISTOPHE DANSAC ◽  
...  

Abstract This article examines young people’s experiences of open access youth work in settings in the UK, Finland, Estonia, Italy and France. It analyses 844 individual narratives from young people, which communicate the impact of youthwork on their lives. These accounts are then analysed in the light of the European youth work policy goals. It concludes that it is encouraging that what young people identify as the positive impact of youth work are broadly consistent with many of these goals. There are however some disparities which require attention. These include the importance young people place on the social context of youth work, such as friendship, which is largely absent in EU youth work policy; as well as the importance placed on experiential learning. The paper also highlights a tension between ‘top down’ policy formulation and the ‘youth centric’ practices of youth work. It concludes with a reminder to policy makers that for youth work to remain successful the spaces and places for young people must remain meaningful to them ‘on their terms’.


2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1138.2-1138
Author(s):  
C. S. E. Lim ◽  
M. Tremelling ◽  
L. Hamilton ◽  
A. Macgregor ◽  
K. Gaffney

Background:Axial spondyloarthritis (axSpA) is associated with inflammatory bowel disease (IBD). In IBD patients, the clinical probability of axSpA increases in those with chronic back pain (CBP) whose symptoms started before the age of forty-five years old. In practice, this should trigger a rheumatology review especially if accompanied by other symptoms suspicious of inflammatory disease. However, in any health system, the goal of identifying all possible cases need to be balanced with the practical realisation of the finite resources available.Objectives:The study aimed to define the clinical characteristics of a subgroup of IBD patients who are routinely managed in secondary care who have an increased clinical probability for axSpA. Identification of these characteristics may help improve the quality and specificity of referrals to Rheumatology from Gastroenterology clinics.Methods:An analytical cross-sectional study was undertaken. Consecutive IBD patients attending routine Gastroenterology clinics were sent a modified validated back pain questionnaire. The questionnaire included the presence or absence of a previous diagnosis of axSpA; components of validated inflammatory back pain criteria; diagrams to indicate the location of back pain and other musculoskeletal pain; personal and family history of known axSpA manifestations; and details of their IBD course, activity and treatment.IBD patients, with back pain duration > 3 months with onset before 45 years were considered to have a medium diagnostic probability (MDP) for axSpA. MDP-positive IBD patients were compared with MDP-negative IBD patients and logistic regression was used to model the association with clinical features.Results:Four hundred and seventy consecutive IBD patients (mean age 54 years; 46% male) were surveyed. Two hundred and nine patients (59%) replied, of whom 191 patients (69%) consented to participate. One hundred and seventy-three (91%) of those who consented had a valid completed questionnaire and were included for data analysis. Of these, 74% had Ulcerative Colitis and 26% had Crohn’s disease. Their mean age was 58 years, 39% male. Mean age at IBD diagnosis was 39 years, mean IBD disease duration 19 yrs. CBP (back pain greater than three months) was reported by 76%. Inflammatory back pain fulfilling Calin, Berlin, ASAS criteria was seen in 23%, 29%, and 15% respectively. In addition, 80% reported peripheral musculoskeletal pain. Self-reported personal history of enthesitis, reactive arthritis (ReA), acute anterior uveitis (AAU), skin psoriasis (PSO) and dactylitis were 50%, 30%, 24%, 15% and 0% respectively. Self-reported family history of IBD, ReA, PSO, axSpA and AAU were 60%, 36%, 22%, 11%, and 1% respectively.Ninety-one (53%) patients were MDP-positive and 82 (47%) patients were MDP-negative. The clinical characteristics associated with MDP (adjusted for age at invitation) were: the presence of inflammatory back pain using ASAS criteria [OR 8.84 (1.61,48.67); p=0.01], longer interval between symptom onset and gastroenterologist diagnosis of IBD [OR 1.09 (1.03,1.16); p=0.005], and use of rectal topical 5-aminosalicylic acid [OR 3.27 (1.11,9.68); p=0.03].Conclusion:Chronic back pain and peripheral musculoskeletal pain are common in a secondary care IBD population. In IBD patients, with back pain duration > 3 months and onset before 45 years, the presence of inflammatory back pain, longer diagnostic delay of IBD and the use of rectal topical 5-aminosalicylic acid were associated with a higher clinical probability of axSpA. The identification of these clinical features may not only improve the quality and specificity of Rheumatology referrals from Gastroenterology in this subgroup of patients but also lends real world evidence to current ASAS-endorsed recommendations for early referral of patients with a suspicion of axial spondyloarthritis.Disclosure of Interests:Chong Seng Edwin Lim Grant/research support from: AbbVie - Research support/grant but NOT for this study., Mark Tremelling: None declared, Louise Hamilton: None declared, Alexander Macgregor: None declared, Karl Gaffney Grant/research support from: AbbVie, Celgene, MSD, Novartis, Pfizer, and UCB Pharma, Consultant of: AbbVie, Celgene, MSD, Novartis, Pfizer, and UCB Pharma, Speakers bureau: AbbVie, Celgene, MSD, Novartis, Pfizer, and UCB Pharma


2020 ◽  
Vol 7 (Supplement_1) ◽  
pp. S714-S715
Author(s):  
Jean-Etienne Poirrier ◽  
Theodore Caputi ◽  
John Ayers ◽  
Mark Dredze ◽  
Sara Poston ◽  
...  

Abstract Background A small number of powerful users (“influencers”) dominates conversations on social media platforms: less than 1% of Twitter accounts have at least 3,000 followers and even fewer have hundreds of thousands or millions of followers. Beyond simple metrics (number of tweets, retweets...) little is known about these “influencers”, particularly in relation to their role in shaping online narratives about vaccines. Our goal was to describe influential Twitter accounts that are driving conversations about vaccines and present new metrics of influence. Methods Using publicly-available data from Twitter, we selected posts from 1-Jan-2016 to 31-Dec-2018 and extracted the top 5% of accounts tweeting about vaccines with the most followers. Using automated classifiers, we determined the location of these accounts, and grouped them into those that primarily tweet pro- versus anti-vaccine content. We further characterized the demographics of these influencer accounts. Results From 25,381 vaccine-related tweets available in our sample representing 10,607 users, 530 accounts represented the top 5% by number of followers. These accounts had on average 1,608,637 followers (standard deviation=5,063,421) and 340,390 median followers. Among the accounts for which sentiment was successfully estimated by the classifier, 10.4% (n=55) posted anti-vaccine content and 33.6% (n=178) posted pro-vaccine content. Of the 55 anti-vaccine accounts, 50% (n=18) of the accounts for which location was successfully determined were from the United States. Of the 178 pro-vaccine accounts, 42.5% (n=54) were from the United States. Conclusion This study showed that only a small proportion of Twitter accounts (A) post about vaccines and (B) have a high follower count and post anti-vaccine content. Further analysis of these users may help researchers and policy makers better understand how to amplify the impact of pro-vaccine social media messages. Disclosures Jean-Etienne Poirrier, PhD, MBA, The GSK group of companies (Employee, Shareholder) Theodore Caputi, PhD, Good Analytics Inc. (Consultant) John Ayers, PhD, GSK (Grant/Research Support) Mark Dredze, PhD, Bloomberg LP (Consultant)Good Analytics (Consultant) Sara Poston, PharmD, The GlaxoSmithKline group of companies (Employee, Shareholder) Cosmina Hogea, PhD, GlaxoSmithKline (Employee, Shareholder)


Author(s):  
Geoffrey Meen ◽  
Christine Whitehead

Affordability is, perhaps, the greatest housing problem facing households today, both in the UK and internationally. Even though most households are now well housed, hardship is disproportionately concentrated among low-income and younger households. Our failure to deal with their problems is what makes housing so frustrating. But, to improve outcomes, we have to understand the complex economic and political forces which underlie their continued prevalence. There are no costless solutions, but there are new policy directions that can be explored in addition to those that have dominated in recent years. The first, analytic, part of the book considers the factors that determine house prices and rents, household formation and tenure, housing construction and the roles played by housing finance and taxation. The second part turns to examine the impact of past policy and the possibilities for improvement - discussing supply and the impact of planning regulation, supply subsidies, subsidies to low-income tenants and attempts to increase home ownership. Rather than advocating a particular set of policies, the aim is to consider the balance of policies; the constraints under which housing policy operates; what can realistically be achieved; the structural changes that would need to occur; and the significant sacrifices that would have to be made by some groups if there are to be improvements for others. Our emphasis is on the UK but throughout the book we also draw on international experience and our conclusions have relevance to analysts and policy makers across the developed world.


Author(s):  
Kate Hunt ◽  
Nathan Critchlow ◽  
Ashley Brown ◽  
Christopher Bunn ◽  
Fiona Dobbie ◽  
...  

The COVID-19 pandemic led to unprecedented restrictions on people’s movements and interactions, as well as the cancellation of major sports events and social activities, directly altering the gambling landscape. There is urgent need to provide regulators, policy makers and treatment providers with evidence on the patterns and context of gambling during COVID-19 and its aftermath. This protocol describes a study addressing the following three questions: (1) How has COVID-19 changed gambling practices and the risk factors for, and experience of, gambling harms? (2) What is the effect of COVID-19 on gambling marketing? (3) How has COVID-19 changed high risk groups’ gambling experiences and practices? This mixed-method study focuses on two groups, namely young adults and sports bettors. In workpackage-1, we will extend an existing longitudinal survey of gambling in young adults (aged 16–24 years) (first wave conducted June–August 2019), adding COVID-19-related questions to the second wave (July–August 2020) and extending to a third wave in 2021; and undertake a survey of sports bettors in the UK (baseline n = 4000, ~July–August 2020), with follow-ups in ~October–November 2020 and ~February-March 2021. In workpackage-2, we will examine changes in expenditure on paid-for gambling advertising from January 2019 to July 2021 and undertake a mixed-method content analysis of a random sample of paid-for gambling advertising (n ~ 200) and social media marketing (n ~ 100) during the initial COVID-19 “lockdown”. Workpackage-3 will involve qualitative interviews with a purposive sample of (a) young adults (aged 18–24 years) and (b) sports bettors.


Author(s):  
Stefan Siebert ◽  
Sengupta Raj ◽  
Alexander Tsoukas

Patients with ankylosing spondylitis (AS) and axial spondyloarthritis (axSpA) consistently report lower health-related quality of life compared to the general population. The effects of the condition include factors such as pain, reduced mobility, poor sleep, fatigue, and depression, with a similar burden of disease in patients with non-radiographic axSpA and established AS. The impact of fatigue and factors associated with fatigue in axSpA are discussed. AxSpA also significantly impacts on social and work participation. Patients with AS have lower work participation and are more likely to retire earlier than the general population. Those patients in work have reduced work productivity, due to absenteeism (ability to attend work) and presenteeism (productivity while at work) as a result of the condition. The financial cost of AS varies significantly between countries; estimates for the costs in the UK are discussed.


2010 ◽  
Vol 24 (5) ◽  
pp. 393-397 ◽  
Author(s):  
André Luiz de Campos

The experience of the UK Research Councils in assessing the impacts of their research funding is discussed, including a report on the findings of research which reviewed the impact studies implemented by the Research Councils. The response of the Councils to the challenge of demonstrating the impacts of their funding and the main methodologies used are presented and the implications of both for the Research Councils and policy makers elsewhere are outlined.


2021 ◽  
Author(s):  
Rebecca Wells ◽  
Candice Howarth ◽  
Lina I. Brand-Correa

Abstract In light of increasing pressure to deliver climate action targets, and the growing role of citizens in raising the importance of the issue, deliberative democratic processes (e.g. Citizen Juries and Citizen Assemblies) on climate change are increasingly being used to provide a voice to citizens in climate change decision-making. Through a comparative case study of two processes that ran in the UK in 2019 (the Leeds Climate Change Citizens’ Jury and the Oxford Citizens’ Assembly on Climate Change), this paper investigates how far Citizen Assemblies and Juries on climate change are increasing citizen engagement on climate change and creating more citizen-centred climate policy-making. Interviews were conducted with policy-makers, councillors, professional facilitators and others involved in running these processes to assess motivations for conducting these, their structure and the impact and influence they had. The findings suggest the impact of these processes is not uniform: they have an indirect impact on policymaking by creating momentum around climate action and supporting the introduction of pre-planned or pre-existing policies rather than a direct impact by being truly being citizen-centred policymaking processes or conducive to new climate policy. We conclude with reflections on how these processes give elected representatives a public mandate on climate change, that they help to identify more nuanced and in-depth public opinions in a fair and informed way, yet it can be challenging to embed citizen juries and assemblies in wider democratic processes.


2021 ◽  
Vol 2 ◽  
Author(s):  
Steven King ◽  
Alberto Striolo

Much media and societal attention is today focused on how to best control the spread of coronavirus (COVID-19). Every day brings us new data, and policy makers are implementing different strategies in different countries to manage the impact of COVID-19. To respond to the first ‘wave’ of infection, several countries, including the UK, opted for isolation/lockdown initiatives, with different degrees of rigour. Data showed that these initiatives have yielded the expected results in terms of containing the rapid trajectory of the virus. When this article was first prepared (April 2020), the affected societies were wondering when the isolation/lockdown initiatives should be lifted. While detailed epidemiological, economic as well as social studies would be required to answer this question completely, here we employ a simple engineering model. Albeit simple, the model is capable of reproducing the main features of the data reported in the literature concerning the COVID-19 trajectory in different countries, including the increase in cases in countries following the initially successful isolation/lockdown initiatives. Keeping in mind the simplicity of the model, we attempt to draw some conclusions, which seem to suggest that a decrease in the number of infected individuals after the initiation of isolation/lockdown initiatives does not necessarily guarantee that the virus trajectory is under control. Within the limit of this model, it would seem that rigid isolation/lockdown initiatives for the medium term would lead to achieving the desired control over the spread of the virus. This observation seems consistent with the 2020 summer months, during which the COVID-19 trajectory seemed to be almost under control across most European countries. Consistent with the results from our simple model, winter 2020 data show that the virus trajectory was again on the rise. Because the optimal solution will achieve control over the spread of the virus while minimising negative societal impacts due to isolation/lockdown, which include but are not limited to economic and mental health aspects, the engineering model presented here is not sufficient to provide the desired answer. However, the model seems to suggest that to keep the COVID-19 trajectory under control, a series of short-to-medium term isolation measures should be put in place until one or more of the following scenarios is achieved: a cure has been developed and has become accessible to the population at large; a vaccine has been developed, tested and distributed to large portions of the population; a sufficiently large portion of the population has developed resistance to the COVID-19 virus; or the virus itself has become less aggressive. It is somewhat remarkable that an engineering model, despite all its approximations, provides suggestions consistent with advanced epidemiological models developed by several experts in the field. The model proposed here is however not expected to be able to capture the emergence of variants of the virus, which seem to be responsible for significant outbreaks, notably in India, in the spring of 2021, it cannot describe the effectiveness of vaccine strategies, as it does not differentiate among different age groups within the population, nor does it allow us to consider the duration of the immunity achieved after infection or vaccination.


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