bluuebunny/crossref_metadata_2025_split huggingface dataset:
OA36 Treatment of Takayasu’s arteritis with anti-tumour necrosis factor: real world data from a UK tertiary referral centre
Authors: Colquhoun Matthew , Maughan Robert , Porter Andrew , Satara Japna , Hanlon Samuel , Nouza Jan , Youngstein Taryn A , Mason Justin 
Published: April 2023

Abstract

Background/Aims
Takayasu’s arteritis (TAK) is a rare granulomatous vasculitis affecting the aorta and its major branches. It is associated with significant morbidity. Initial treatment typically consists of corticosteroids and one or more conventional synthetic steroid sparing agents e.g. methotrexate/mycophenolate. In the case of disease progression or inability to wean corticosteroids, additional therapy in the form of biologic medications may be necessary. Tocilizumab is approved for the treatment of Takayasu’s arteritis in the UK, while anti-TNF therapies are not commissioned for this indication. This stands in contrast to guidelines from the USA, which prefer anti-TNF as a first line biologic agent. We describe the characteristics and outcomes of patients treated with anti-TNF at a single UK centre.

Methods
We retrospectively evaluated 14 Takayasu’s arteritis patients treated with anti-TNF agents out of a total cohort of 158 patients at a tertiary Takayasu’s arteritis clinic at a single UK academic centre.

Results
14/158 patients (8.8%) received anti-TNF therapy for treatment of active TAK. The average age at diagnosis was 27 years. 93% (13/14) patients were female. 71% (10/14) were Caucasian and 3/14 (21%) were Asian. Prior treatment with prednisolone was ubiquitous. 5/14 (35.7%), 1/14 (7.1%), 4/14 (28.5%) and 3/14 (21%) received treatment with 1, 2, 3 or 4 csDMARDs respectively. 78.5% received methotrexate and 64.5% of patients received azathioprine with cyclophosphamide (35%) and mycophenolate mofetil (28.5%) less commonly used. 6/14 (42.8%) of the cohort had a co-existent justification for anti-TNF treatment e.g. ankylosing spondylitis, uveitis or Crohn’s disease. 100% of the cohort had stenotic/occlusive disease prior to anti-TNF treatment with 6/14 (42.8%) also having abnormal vascular dilatation. 4/14 (28.5%) experienced treatment failure defined as active inflammation or disease progression. 3 patients experienced radiographic progression (stenosis or dilatation) and 1 early treatment failure. Total time on anti TNF treatment for these four patients were 2 (early treatment failure), 13, 15 and 93 months. 71.5% of patients had stable radiographic appearances during an average total treatment time of 70 months (range 24-120).

Conclusion
This retrospective examination of patients with severe Takayasu’s arteritis treated with anti-TNF at a specialist centre demonstrates that 71.5% of patients had stable angiographic disease over a long duration of follow up, suggesting anti-TNF therapy may be an option for those patients for whom tocilizumab is ineffective or not tolerated.
Disclosure
M. Colquhoun: Honoraria; Support to attend a conference from Pfizer. R. Maughan: None. A. Porter: None. J. Satara: None. S. Hanlon: None. J. Nouza: None. T.A. Youngstein: None. J. Mason: None.
OA41 Online MDT patient education for early inflammatory arthritis
Authors: Gwynne Catherine , Gilbard Shaun , Weller Zoe , Clemence Mark , Parsons Claire , Penford Rian 
Published: April 2023

Abstract

Background/Aims
Patient education in early inflammatory arthritis (EIA) promotes understanding and engagement with treatment, empowering patients to use self-management in their long-term health condition. It is embedded in national guidance and audit. Individual appointments are time consuming, and groups sessions became impossible during the COVID-19 pandemic. Our education sessions have evolved to a monthly online meeting which aims to be engaging, effective and time efficient.

Methods
Face-to-face group education afternoons were previously embedded into our early arthritis pathway. Presentations and opportunities for questions were given by a rheumatology consultant, nurse, physiotherapist, podiatrist and occupational therapist. Sessions lasted 2 hours and local charity representatives attended. Group education sessions completely stopped with the COVID-19 pandemic restrictions. This successful MDT model was moved to a monthly Microsoft Teams meeting and condensed to 1 hour. Sessions continue to consist of five short presentations, introduction to charity representatives and opportunity for questions. Following the session, all patients received links to videos of the talks for future reference, contact details for the MDT and local charities, and a link to download our local rheumatology self management app. Patients who are unable to attend also receive this content by email. Patient feedback was gathered through an online questionnaire.

Results
Attendance has increased over time with 75% of our new EIA patients now attending each month. Feedback from 16 patients rated 75% of all talks as extremely useful or useful. 89% are interested in attending future meetings. 93% had already used or plan to use our rheumatology self management app. Positive patient feedback included: “the whole team were brilliant giving advice and answering questions”, “nice to see the specialists' faces, and to get the feeling they really cared”, and “a perfectly sensible and productive way to introduce all the options for help and support”.
Some patients did not feel confident to ask questions in the meeting. Email and telephone advice lines were signposted. Attendance was increased by 40% by a short telephone reminder of the appointment.

Conclusion
An online meeting has proven to be a time efficient and effective way of providing multidisciplinary education and introducing self management. A short time investment from each MDT member gives breadth to the education. Inviting all newly diagnosed early arthritis patients and encouraging attendance by a short telephone call has maximised reach. Ensuring all patients are sent presentation videos to re-watch and the self referral details further facilitates self management. The format could easily be adapted to other patient education events.
Disclosure
C. Gwynne: None. S. Gilbard: None. Z. Weller: None. M. Clemence: None. C. Parsons: None. R. Penford: None.
P006 A national patient-reported experience survey (PREM) of advanced nurse practitioners in rheumatology, Ireland
Authors: Martin Una E 
Published: April 2023

Abstract

Background/Aims
Data collection to assess the impact of rheumatology advanced nurse practitioners (RANPs) on service quality tends to prioritise the quantitative impact on waiting lists and hospital admissions. However, patients’ views on the quality of service experienced is fundamental and essential to achieve high quality of care. Recording patients experience of care has the potential to improve quality of care. The Irish Rheumatology Nursing Forum (IRNF) wanted to measure patients' experience of care by an RANP and highlight triggers for change to enhance the quality of care delivery nationally.

Methods
The IRNF conducted a service evaluation postal survey using patient reported experience measure (RA PREM), previously designed, and validated for use with rheumatology patients. This tool examines eight domains of care specific to patients with inflammatory arthritis (need and preferences; care coordination; information about care; daily living; emotional support; family and friends; access to care) and is proven to be effective in measuring and monitoring patient experience. Minor adjustments were made to the questionnaire specific to the role of the advanced nurse practitioner. Patients seen by an advanced nurse practitioner within the previous 12-months were supplied with a questionnaire and a stamped address envelope during a 6-week period, in early 2022. Patient participation was voluntary, postal return of a complete survey implied consent.

Results
Eleven eligible rheumatology centres with twenty advanced nurse practitioners participated nationally. A total 350 questionnaires were disseminated, 188 completed questionnaires were returned, (54% response rate). In the previous 12-month period 38% of respondents had at least 2 appointments. Appointments with the advance nurse practitioner were predominantly face-to-face (73%), and a further 26% were telephone consultations. Most patients reported involvement in their care decisions, being emotionally supported, and that communication and service access were timely. Patients endorsed a good experience of care for their inflammatory arthritis (67% strongly agreed, 25% agreed). Most patients (71%) reported good control of their arthritis which allowed them to get on with usually daily life activities. Results from the self-care domain demonstrated low levels of knowledge about patient organisations and self-management programmes.

Conclusion
Optimising the quality of care delivered by advance nurse practitioners is contingent on measuring patient experience. The self-management organisations/programme knowledge deficit among patients will be addressed by the IRNF in partnership with the patient organisation Arthritis Ireland. It is incumbent on advanced practice nurses to undertake service evaluations for quality improvement and further service development. Periodic use of PREMS is a feasible way to inform service evaluation for quality improvement.
Disclosure
U.E. Martin: None.
P008 Hydroxychloroquine-related adverse events, attrition and reasons for cessation over 5 years at a district general hospital: estimating future ophthalmology screening service use
Authors: Barahman Dalal , Saleh Christopher , Paul Anindita 
Published: April 2023

Abstract

Background/Aims
Hydroxychloroquine (HCQ) is used widely in the management of rheumatic diseases and is considered to be generally well tolerated. HCQ ocular toxicity is a dose- and time-related reaction. The Royal College of Ophthalmologists (RCOphth) noted a low rate of drug discontinuation as a result of baseline testing (&lt; 4%) and that prevalence data for HCQ ocular toxicity was based on treatment duration &gt;5 years. The RCOphth updated their ocular toxicity screening guideline in 2020. A major change was removal of requirement for baseline screening, with screening commenced at 5 years of treatment unless risk factors are present. Though the number of patients starting HCQ treatment and the UK prescribing data could be estimated, the proportion of patients remaining on treatment for &gt;5 years was stated to be unknown. We reviewed departmental HCQ prescribing, adverse event and attrition data over 5 years from Bolton NHS Foundation Trust, a district general hospital which serves a population of nearly 300,000.

Methods
Patients were identified as newly commencing HCQ if they had a shared care agreement in the calendar year 2016. Adverse events, attrition rates and reasons for cessation were obtained through review of hospital records over 5 years.

Results
In the 2016 calendar year, 100 patients commenced HCQ. The mean age was 58, and 70% patients were female. The most common indication was rheumatoid arthritis (75%). At 1 year, 30% of patients had stopped taking HCQ. At 5 years 57% of patients had stopped taking HCQ. The most common reason for cessation at 1 year was gastrointestinal symptoms (30%), and remained the most common reason at 5 years (19%). Eye symptoms were documented as reason for cessation in 7% of patients at 1 year, and 5% of patients at 5 years. On review of records, none of these were thought to be attributable to HCQ, though it was not recommenced. There were no patient deaths directly attributable to HCQ use.

Conclusion
A significant proportion of patients (57%) stopped taking HCQ after 5 years. The rate of attrition was highest within 12 months, which then almost doubled by 5 years. Centres wishing to estimate the workload related to HCQ retinopathy screening can capture their prescribing for patients newly starting HCQ and/or their catchment population numbers to estimate the Ophthalmology activity related to this 5 years' hence. This may help to fund and staff adequately to successfully carry out this drug safety activity.
Disclosure
D. Barahman: None. C. Saleh: None. A. Paul: None.
P013 A three-year audit of dose tapering biologic medications in a rheumatology service
Authors: Light Helen , Firth Jill , Bluett James , Kinsey Katharine 
Published: April 2023

Abstract

Background/Aims
Dose tapering of biologic therapies is supported by both ACR and EULAR guidelines. Identification of appropriate patients may deliver cost savings whilst minimising the risk of disease flare. To audit dose tapering activity for patients treated with bDMARD for rheumatoid (RA), psoriatic arthritis (PsA) and ankylosing spondylosis (AS) meeting locally agreed criteria over three years.

Methods
All patients treated with a bDMARD for RA, PsA or AS fulfilling criteria for dose tapering between 1st October 2019 - 1st October 2021 were identified from electronic health records (EHR). Rituximab patients were excluded due to reactive treatment responding to flare. Patients were required to have been on their bDMARD for = &gt; one year, not prescribed oral steroids / treated with parenteral steroids in the past six months, no swollen joints in the past six months, and not failed dose tapering in the previous year. RA patients were ineligible if DAS ≥3.2 in the previous year; PsA if their biologic was prescribed by dermatology /active psoriasis; AS patients if BASDAI score of &gt; 4 in past year. Records were flagged to prompt a shared decision-making discussion between the treating clinician and patient during routine appointments; additional patients were identified through clinical assessment. Failing dose tapering was defined as a post tapering flare requiring dose increase within one year. Patients were tapered by increasing the interval of a bDMARD.

Results
The number of patients that dose tapered increased from 24 in 2019 to 51 in 2021, making a total estimated NHS list saving of up to £170,000 per annum. (Table 1). Tapering was unsuccessful for 7/116 (6%) due to post tapering flares. Patients flaring after tapering were reassessed urgently and had their bDMARD dose reviewed. More patients were eligible than identified from EHR search due to missing data in coding; 787 (61%) across all years.

Conclusion
Dose tapering was well tolerated in eligible patients making this a safe and acceptable initiative. Use of EHR data and behavioural prompts for clinicians supported this in practice. Cost savings were reinvested to increase pharmacy support for homecare prescription management.
Disclosure
H. Light: None. J. Firth: None. J. Bluett: Grants/research support; JB has received a research grant from Pfizer. Other; JB has received travel/conference fees from UCB, Pfizer and Eli Lilly. K. Kinsey: None.
P014 Experience of baricitinib in a real-world population with efficacy and side effects: a South London regional analysis
Authors: Buckeldee Olivia , Biddle Kathryn , Latheef Afzal , Al-Shakarchi Israa , Sofat Nidhi 
Published: April 2023

Abstract

Background/Aims
Baricitinib is the most common Janus Kinase inhibitor (JAKi) used in the treatment of rheumatological conditions. Whilst randomised controlled trials have demonstrated the efficacy and safety profile of baricitinib, real-world data on the experience of JAKi use in clinical practice is lacking. The aim of this analysis was to evaluate baricitinib use in a real-world patient population in South London.

Methods
We looked at two rheumatology departments in South London (St George’s Hospital; a tertiary teaching centre and Kingston Hospital; a district general hospital). All patients prescribed baricitinib between January 2017 to June 2022 were included. A retrospective assessment of electronic patient notes was performed to evaluate disease activity (determined by DAS-28 scores at baseline, 3-6 months and presently); adverse effects including side effects, rates of and reasons for discontinuation; and prescribing practice, including previous use of other biological disease modifying anti-rheumatic drugs (bDMARDs). Baseline data including age, gender, co-morbidities and rheumatological diagnoses were also included.

Results
233 patients were included in this evaluation, with seropositive rheumatoid arthritis being the most common diagnosis (58%) and with a significant female population (87%). Baricitinib improved average DAS-28 scores from 5.75 (range 3.57-8.3) at baseline to 3.23 (range 0.28-7.49) at 3-6 months post-baricitinib, with the most recent DAS-28 score of 2.90 (range 0.56-6.77). Rates of adverse effects were low as shown in Table 1. Baricitinib was discontinued in 60/233 patients, with average duration to discontinuation of 9.5 months. The most common reasons for discontinuation were: ineffective disease control (28/60), recurrent bacterial infection (5/60), deranged liver function (3/60) and venous thromboembolism (2/60). Eight patients died whilst taking baricitinib. Where documented, the causes of death were Covid-19 (4/8) and malignancy (1/8). 110 out of 233 patients had received other bDMARDs before starting baricitinib. Documented reasons for baricitinib choice over tumour necrosis factor inhibitors (TNFi) included: previous lack of response to TNFi (89/233), contra-indication to TNFi (11/233) and preference of oral route (10/233).

Conclusion
Our real-world study of JAKi use shows that baricitinib is efficacious in the treatment of rheumatological conditions. Moreover, baricitinib is well tolerated, with low rates of adverse effects and subsequent discontinuation.
Disclosure
O. Buckeldee: None. K. Biddle: None. A. Latheef: None. I. Al-Shakarchi: None. N. Sofat: None.
P023 National care of patients with Polymyalgia Rheumatica: Audit of steroid usage from UK GP data - a cause for concern?
Authors: Saha Pratayasha , Brown Julian , MacGregor Alexander , Aldus Clare , Yates Max 
Published: April 2023

Abstract

Background/Aims
Polymyalgia rheumatica (PMR) is the most common autoimmune musculoskeletal condition in the developed world. Current BSR guidelines recommend glucocorticoid treatment for one to two years and give suggested taper regimens. The project examines national primary care data to assess the level of adherence to current guidelines, and the proportion of patients at risk from the deleterious effects of prolonged steroid exposure.

Methods
The ECLIPSE databased covers over 25m patients across 2400 general practices in England and provides insights for enhanced clinical pathway management and to support patient safety in primary care. Routinely recorded diagnoses from primary care data are updated daily, along with administrative prescribing data. Using standardised nationally agreed disease coding frameworks, all diagnoses of PMR were retrieved from the live patient population of 25.4m individuals registered with general practices across England. Primary care diagnosis data for patients with a new diagnosis of PMR recorded in primary care on or after 01/01/2016 were linked with prescribing data from the same time period and followed to 10/10/2022. From the current BSR guidelines the following thresholds were taken to represent above recommended cumulative glucocorticoid exposure: 0-6 months &gt;2100mg, 7 to 12 months &gt;1400mg, 13 to 18 months &gt;910mg and 19 to 24 months &gt;910mg. Finally total numbers of those still prescribed glucocorticoids past 60 months was taken as to represent those who had become steroid-dependent.

Results
Over the observation period of 6.8 years there were 95,862 people diagnosed with PMR from the UK national data, of whom 22,677 were diagnosed in the East of England and 5,315 from the Norfolk and Waveney Integrated Care System. The prevalence was 0.99%, 1.00% and 1.5% for those aged older than 50 years across the three areas respectively consistent with published disease estimates. There was considerable number of individuals with PMR prescribed glucocorticoids above the recommend levels (see Table 1).

Conclusion
There is significant departure from the suggested PMR tapering regimens which may be due to frequency of relapse, inadequate treatment response or inadequate guideline implementation. Strategies to reduce glucocorticoid exposure in this older co-morbid population are required urgently.
Disclosure
P. Saha: None. J. Brown: None. A. MacGregor: None. C. Aldus: None. M. Yates: None.
P026 Chronic chilblain like lesions associated with the COVID-19 pandemic
Authors: Nathan Joseph A , Kiely Patrick 
Published: April 2023

Abstract

Background/Aims
We report the features of chronic chilblain-like digital lesions newly presenting since the start of the covid-19 pandemic. Comparison with primary perniosis and acrocyanosis, reveals a unique phenotype which appears to be a long-covid phenomenon.

Methods
The case records of 26 patients with new onset persistent chilblain-like lesions presenting to the Rheumatology service of St George’s University Hospital, London between Autumn 2020 and Spring 2022 were reviewed. Demographic and clinical features, serology, imaging, treatment response and outcome up to Summer 2022 were collated retrospectively.

Results
Chilblain-like lesions first occurred between September and March; 2019/2020 6 cases, 2020/2021 18 cases and 2021/2022 2 cases. Mean age 35.4 (17-60) years, 88% female, 85% white, all non-smokers. Median body mass index (BMI) 20.2, range 17.0 - 33.2. BMI underweight (&lt;18.5) in 27%. All cases reported new red-purple-blue colour changes of the fingers, some with pain, swelling and pruritis, affecting both hands in 12, one hand in 6, and both hands and feet in 8 cases. There was a past history of cold sensitivity or primary Raynaud’s in 54%. Covid was confirmed in 3 cases, 2 - 8 months prior to onset of chilblain-like symptoms. Possible covid, unconfirmed, was suspected in 5 cases, 1 - 11 months earlier. Affected digits appeared diffusely erythro-cyanotic in 81%, with blotchy discrete maculo-papular erythematous lesions in 42%, some with both features. Involvement was asymmetric in 54%, thumbs spared in 69%. Complement was low in 50% (8/16), ANA positive in 26% (6/23). MRI of hands showed phalangeal bone marrow oedema in keeping with osteitis in 4 of 7 cases. More severe signs and symptoms were associated with low BMI, low C3/4 and a past history of cold sensitivity or Raynauds. Cold avoidance strategies were sufficient for 58%. Pain prompted a trial of NSAIDs, aspirin, nitrates, calcium channel blockers, hydroxychloroquine, oral or topical corticosteroid or topical tacrolimus in 42%. In general, these were minimally effective or not tolerated. 4 severe cases received sildenafil or tadalafil, effective in 2. In 27% complete remission occurred during the first summer season after symptoms commenced, median duration 6 (range 2 - 10) months. In the remaining 19 cases, chilblain-like symptoms returned or worsened in the subsequent second winter period, with 6 of 19 entering remission the following summer. For the remaining 13 persistent cases the total duration of symptoms spans more than a year, and in four cases more than 2 years.

Conclusion
This series illustrates a distinct chronic chilblain-like condition. Features similar to primary perniosis include female predominance, middle age, pruritic painful blotchy lesions, asymmetry and low BMI. Features in keeping with acrocyanosis include chronicity, extensive diffuse erythro-cyanotic discoloration, relative improvement in warm weather and lack of association with smoking.
Disclosure
J.A. Nathan: None. P. Kiely: None.