UK Rheumatology Research Articles

P057 Scoping the role of the physiotherapist in the axial spondyloarthritis new patient clinic

Abstract Background/Aims Early diagnosis of Axial Spondyloarthritis (Axial SpA) is crucial to reduce negative impacts and support better patient outcomes through early intervention. There are a number of challenges contributing to delayed diagnosis, the focus of this report relates to the capacity pressures limiting timely assessment and diagnosis. There are a number of well-established, and more recently initiated, physiotherapist-led Axial SpA new patient clinics across UK Rheumatology. These clinics have been locally reported to reduce delays in diagnosis. There is growing interest from other rheumatology services to establish these clinics. A working group of physiotherapists providing physiotherapist-led Axial SpA clinics were supported by a BRITSpA Travelling Fellowship Grant to meet to share service experiences and to develop a consensus-driven best-practice set of recommendations to guide planning and implementing physiotherapist-led Axial SpA new patient assessment clinics in rheumatology departments across the UK. The aim of this report is to provide an overview of the two day Travelling Fellowship project process and the key initial outcomes from the workshop. Methods A two-day workshop attended by ten physiotherapists meeting in person and four joining virtually, all with expertise in providing physiotherapist-led new and review Axial SpA clinics. The workshop programme included presentations from national and international experts, encompassing GIRFT input, exemplar consensus development examples and an opportunity for all fellows to share their experience in setting up and delivering physiotherapist-led Axial SpA new patient clinics. Discussion time was prioritised to allow shared learning, discussion of similarities and local variations to support information gathering and the development of expert consensus-driven guidelines and implementation advice. Patient and public involvement was embedded into the workshop supporting planning discussions and providing lived experience perspectives, preferences and values concerning the implementation and service delivery discussions. Results The major themes and findings identified included the variation in role description and specific responsibilities between centres, including variation in support and mentoring available as well as administration time. However, similar outcomes were found regarding levels of confidence and independence in undertaking thorough triage and assessments of inflammatory back pain referrals leading to confirming or excluding Axial SpA diagnoses, and the skillset to manage these outcomes. Conclusion Following GIRFT recommendations, and in light of the workforce crisis in rheumatology, with support from the rheumatology physiotherapy capabilities framework we have seen the expansion of the physiotherapist role. We have good levels of confidence, following our sharing of clinic data and patient experience comments, that there is a valuable contribution to the rheumatology landscape to be made by physiotherapist-led Axial SpA new patient clinics. Disclosure W.J. Gregory: Honoraria; W.G. has received honoraria for speaking and advisory board from Abbvie, Novartis, Pfizer, Sobi and UCB. R. Adshead: None. Z. Cox: None. E.E. Deeney: None. P.A. Dowie: None. S.J. Fish: None. R. Galway: None. H. Harrison: None. R.J. Hayward: Honoraria; R.H. has received honoraria for speaking from Abbive and Novartis. C. Longton: Honoraria; C.L. has received honoraria for speaking from UCB. M. Motion: None. C. Tonks: None. C. McCrum: Honoraria; C.McC. has received honoraria for professional education workshops- Novartis, Janssen.

E048 A review of published data on reported staffing ratios for rheumatology specialist physiotherapists in rheumatology departments

Abstract Background/Aims The NHS England Getting It Right First Time (GIRFT) Rheumatology Report published in 2021 identified that Rheumatology departments in England were not getting best use of the multidisciplinary skills mix of their teams and that this expertise could be harnessed to address capacity challenges, optimise services and increase service resilience and sustainability. The British Society for Rheumatology (BSR) Workforce Report, published the same year, suggests that services require approximately one Rheumatology Consultant per 60,000-80,000 population and a one-to-one ratio of Rheumatology Specialist Nurses to Consultants. There were no suggestions in either report for Allied Health Professionals' staffing levels. Data presented in the BSR Report show that 50% of UK departments do not have a physiotherapist embedded in their multi-disciplinary team, and 7% of Trusts reported not having access to physiotherapy services. The aim of this project was to review published data on ratios of Rheumatology Specialist Physiotherapists per 100,000 population and to estimate current ratios of Rheumatology Specialist Physiotherapists per Consultant Rheumatologist in UK rheumatology services. Methods A literature review was undertaken, date range 2012-2022, on UK rheumatology staffing ratios for physiotherapists including full papers and abstracts. In addition, the BSR Workforce Report data on the average UK rheumatology department Whole Time Equivalent (WTE) staffing was used to calculate current average ratio of rheumatology physiotherapists to 100,000 population. Results Review of published literature identified one full paper and two conference abstracts. A cross-sectional study in 2017 found an average adjusted mean WTE of 0.3 per 100,000 population. The raw data from published conference abstracts on a repeated survey, in 2017 and 2021, of north-west England Rheumatology Specialist Physiotherapists was reviewed and calculated to show 0.34 and 0.32 WTE respectively for rheumatology physiotherapy per 100,000 population. Analysis of the BSR Workforce Report shows that the current UK average is 0.27 Rheumatology Specialist Physiotherapists per 100,000 population. These BSR data equate to 1 WTE Rheumatology Specialist Physiotherapist for every 5.25 WTE Rheumatology Consultants. Or for every full-time Rheumatologist, a requirement of approximately 1 day per week of rheumatology physiotherapy provision. The data from the three sets of survey data found on literature review, with an average of 0.32 WTE per 100,000 population, equate to 1 WTE rheumatology physiotherapist for every 4.5WTE rheumatology consultants. Conclusion Despite the established wide variation in staffing ratios with regard to multi-disciplinary teams in Rheumatology and a dearth of published information, the data that are available show a remarkable consistency in reported current Rheumatology Specialist Physiotherapist staffing ratios. These data are from surveys of current provision and do not replace evidence-based recommendations, which are still very much required as well as a standard for commissioning as part of an essential package in high-quality service provision. Disclosure W.J. Gregory: None.

E049 The Initial Impacts of the UK-Wide Rheumatology Physiotherapy Capabilities Framework

Abstract Background/Aims The Rheumatology Physiotherapy Capabilities Framework, first published September 2021, was developed to describe the physiotherapy-specific skills and knowledge unique to the speciality and to act as a profession standard. Dissemination strategies for the framework included profiling through professional organisations, specialist interest groups and online via Twitter and ResearchGate. This project aims to describe the initial dissemination of the Framework and to provide an evaluation of the areas of impact within rheumatology networks. Methods An appraisal was undertaken in October 2022 on how widely the Rheumatology Physiotherapy Capabilities Framework has been used and embedded in UK clinical practice and service delivery. Evaluation strategies included data on downloads since publication and a brief online survey of a convenience sample of experienced, specialist rheumatology physiotherapists. The open-ended survey question asked for “implementation feedback on your use of the framework” and allowed undirected free-text comments. Responses were analysed using qualitative content and thematic analysis. Results The framework has been downloaded from the British Society for Rheumatology website 154 times and the launch news story on the BSR website has been viewed 4145 times; the Framework has been accessed 354 times from ResearchGate; analysis of impact on the Twitter shows 33 tweets, 238 likes and 95 “re-tweets”. Thematic analysis identified four key areas of use of the framework:(i) Increasing awareness of the physiotherapy role in a Rheumatology service(ii) Personal and team professional development(iii) Recruitment, job matching, re-banding and promotion(iv) Referral pathways and service improvement. Quotes from the survey responses are collated according to these identified themes in Table 1. Conclusion In its first year of publication, this brief survey indicates that the Rheumatology Physiotherapy Capabilities Framework has already started to accomplish many of the aims of its development. The ability for individuals and services to compare their capabilities to an agreed national standard is supporting staff and services in valuable ways. Service improvement projects have been an additional benefit of the framework. It has already become fairly well embedded in UK rheumatology practice; however, further dissemination, awareness-raising strategies and utilisation support are required to fully accomplish its aims. Disclosure W.J. Gregory: Honoraria; W.G. has received honoraria for speaker and advisory board from Abbvie, Novartis and Pfizer. H. Chambers: None. C. McCrum: Honoraria; C.McC. has received speaker honoraria from Novartis. Grants/research support; C.McC. has received a funding grant from Janssen.

OA27 Growth of the UK and Ireland paediatric rheumatology nurses’ group

OA27 Growth of the UK and Ireland paediatric rheumatology nurses’ group

Nailfold capillaroscopy: a survey of current UK practice and 'next steps' to increase uptake among rheumatologists.

To identify barriers to the use of nailfold capillaroscopy as a diagnostic tool for patients presenting with Raynaud's phenomenon in UK rheumatology centres and to obtain rheumatologists' views on a proposed internet-based standardized system for clinical reporting of nailfold capillaroscopy images. An online survey was developed using expert opinion from clinicians, scientists and health service researchers. The survey was piloted and sent to UK-based rheumatologists using established electronic mailing lists between October 2020 and March 2021. Survey data were analysed using descriptive statistics. A total of 104 rheumatologists representing rheumatology centres across the UK responded to the survey. Wide variations in terms of workloads and practices were described. Thirty-four (33%) respondents reported using nailfold capillaroscopy only at their own centre, 33 (32%) referred to other centres, 9 (9%) did both and 28 (27%) did not use capillaroscopy at all. Of the 43 respondents using capillaroscopy on site, 25 (58%) used either a dermatoscope or universal serial bus microscope and 9 (21%) used videocapillaroscopy. Among the 61 respondents not undertaking capillaroscopy on site, barriers included lack of equipment (85%), lack of experience in acquiring images (69%) and lack of expertise in interpreting images (67%). Sixty-six respondents (63%) expressed interest in an internet-based, standardized automated system for reporting images. Most UK rheumatologists currently do not perform nailfold capillaroscopy on site. An internet-based nailfold capillaroscopy system for use with low-cost microscopes as well as with videocapillaroscopy could help increase uptake of capillaroscopy and thereby facilitate early diagnosis of SSc across the UK.

P265 Current UK wide use of the BASMI outcome measure in axial spondyloarthritis: an AStretch survey

Abstract Background/Aims The Bath Ankylosing Spondylitis Metrology Index (BASMI) is used in the monitoring of those living with axial spondyloarthritis (axSpA); it is the recommended and validated measure of movement in this patient group. As a physical outcome measure its use has been challenging during the COVID-19 pandemic. The aim of this project is to assess the current application of the BASMI in axSpA services across the UK. Methods A survey was devised to explore when the BASMI is used, by whom and the reasons for its use. The AStretch committee reviewed and re-drafted the questions. The survey was shared across multiple platforms and email professional distribution lists, and was open 2nd-12th October 2021. Results 74 UK healthcare professionals completed the survey. It is mostly physiotherapists who undertake the BASMI (69%); some other clinicians also measure: nurses (10%), medics (9%), physiotherapy support workers (10%), healthcare support workers (2%). Confidence in performing the BASMI averaged at 3.5/5. The majority of respondents record the BASMI in the electronic record (73%); app-based solutions are developing (7%) and paper-only recording diminishing (20%). When asked about frequency, most respondents (73%) recorded “it depends”, implying that the BASMI is used on an individual patient basis. Table 1 presents data with regards to why the BASMI is undertaken, scored by participant ranking, and free text responses about reasons for use. Conclusion A large sample size was recruited for this survey, implying a good level of interest in better understanding the current application of the BASMI. It is evident clinicians use the BASMI on newly-diagnosed patients as a priority in their assessment and shared-decision making. Other aspects such as addressing poor movement and adherence to exercise are ranked highly. The reported reasons for BASMI use are varied, and its application not standardised across UK rheumatology teams. This might reflect the diverse trajectory of axSpA and the importance of seeing patients as individuals. How and why we undertake physical outcome measures is crucial for consideration as we currently consider remote versus face-to-face consult pathways for our axSpA cohort. There is enough evidence here to recommend ongoing, regular application of the BASMI in a traditional face-to-face setting. Disclosure K. Weight: None. W.J. Gregory: Honoraria; W.G. has received speaker, conference registration and advisory board fees from Abbvie, Pfizer Novartis and UCB. H. Chambers: None. E. Clarke: Honoraria; E. C. has received speaker fees from Novartis UK. M. Daly: None. A. Davie: None. J.C. Elkins: None. S. Gaikwad: None. H. Harrison: None. C. Longton: Shareholder/stock ownership; C.L. is a shareholder in Astra Zeneca. Honoraria; C.L. has received speaker fees from Novartis. M. Martin: Honoraria; M.M. has received speaker, conference registration and advisory board fees from Abbvie, Novartis (not since 2018). Grants/research support; M.M. received grant monies from the National Axial Spondyloarthritis Society in 2017. M. Motion: None. S. Voules: None. M. McDonald: None. C. Jeffries: Honoraria; C.J. has received speaker, conference registration and advisory board fees from Abbvie, Pfizer, Novartis and UBC.

P085 NRAS New2RA Right Start for people newly/recently diagnosed with RA

Abstract Background/Aims The National Rheumatoid Arthritis Society (NRAS) follows best practice, evidence-based standards in all we do. Whilst huge strides have been made in the diagnosis and treatment of Rheumatoid Arthritis (RA), the impact on quality of life can be significant and for many, RA remains hard to come to terms with. Anxiety and depression are frequent co-morbidities seen in RA, particularly in the early stages. This can impede people’s ability to acquire knowledge about their disease together with supported self-management skills and coping strategies. The aim of Right Start is to improve outcomes of the newly/recently diagnosed with RA through a framework of emotional, educational and peer support, and access to high quality supported self-management resources tailored to individual need. Methods Right Start involves a simple, 4-step process: • a call (up to 1 hr) with a member of our helpline. • 1:1 peer support from trained volunteers with RA, 24/7 online community support • a tailored package of hard copy information with e-links of interest sent by post • further follow up available by helpline and individual peer support Right Start enables health professionals to meet their responsibilities against NICE Quality Standard 33, Statement 3, on which they are audited through National Early Inflammatory Arthritis Audit (NEIAA), and the EULAR Recommendations for implementation of self-management strategies in inflammatory arthritis. Results Since launch at BSR 2019, 71 rheumatology units have referred over 400 patients to this service. Approx. 1/3rd couldn't be contacted and after 3 attempts, a letter and newly diagnosed pack are sent, inviting contact at future date. Anecdotally people are highly satisfied with this service and a number of units are referring multiple patients. To gather empirical data on the impact of the service NRAS has partnered with Manchester University to undertake an Enhanced Right Start pilot in 5 UK rheumatology units involving the use of validated patient reported outcome and experience measures from the users recruited, and quantitative and qualitative data from the health professionals. The pilot is due to commence before end 2021. Meantime, referrals continue to grow. Conclusion The NHS rheumatology workforce is in crisis and Right Start enables professionals to offer evidence-based education and supported self-management resources to optimise patient care. A Nurse Consultant (West Middx.) said of the service: “I have found Right Start to be an excellent resource for people who have recently been diagnosed with RA. When time is limited time in clinic, a referral provides the patient with tailored information which complements the education I have been able to provide. Feedback from patients has been positive particularly relating to the phone calls with the NRAS helpline team and the NRAS volunteer with RA. I would definitely recommend the service.” Disclosure A.M. Bosworth: None. I. McNicol: None.

P244 The use of anti-malarial therapy in UK Rheumatology practice. A UK-based pilot survey for the BILAG group

Abstract Background/Aims Antimalarials have an important role in the management of autoimmune rheumatic disease, especially lupus (SLE) and other connective tissue diseases (CTD). A large North American study demonstrated a risk of retinopathy with hydroxychloroquine, increasing at doses above 5mg/kg and after 10 years or more of continuous therapy. This has influenced the development of specific monitoring ocular guidance for hydroxychloroquine although there has been less attention to potential side effects in routine use. Our aim was to examine hydroxychloroquine use including the effect of changes in ophthalmology guidance Methods We designed a 21-question internet-based survey. This requested information on antimalarials including hydroxychloroquine brand, dosing, monitoring and concerns about use. We requested information about alternatives to hydroxychloroquine including mepacrine and chloroquine, barriers to and indications for prescribing these alternative antimalarials. Results We received 69 responses, 59 (86%) Consultants, 10 (14%) ST’s from across the United Kingdom of which 51% worked in a district general hospital (DGH) setting. Of the Consultants, 28 (47%) ran dedicated CTD clinics. Regarding hydroxychloroquine, 39 respondents (57%) used a defined local pathway for Hydroxychloroquine retinopathy screening. While 59/69 (86%) did not know which hydroxychloroquine brand their pharmacy dispensed, of the remainder, 14/19 (74%) used Quinoric. Regarding hydroxychloroquine dosing, 83% targeted weight-based maintenance dosing with most of these (77%) maintaining at the currently recommended 5mg/kg body weight or less, while 23% used 6.5mg/Kg. No participants measured hydroxychloroquine drug levels. Potential ocular toxicity, cardiac arrythmias and skin hyperpigmentation were reported as the most significant concerns with hydroxychloroquine usage. Of the alternatives, mepacrine was never used by 39%, (77% for chloroquine) while only 4% used either often or very often. Barriers to prescription of these alternative antimalarials were most commonly GP or local Pharmacy unavailability (39% and 17 retrospectively). However, mepacrine/ hydroxychloroquine combination was used by 32% of respondents, most often for refractory skin disease (21 respondents), refractory joint disease (five respondents) and as a steroid sparing drug (six respondents). Conclusion Our results suggest several aspects in which hydroxychloroquine use could be improved. Although recent evidence demonstrates the potential for significant ocular toxicity with Hydroxychloroquine in those taking > 5mg/kg body weight and for >10 years we found practice still varied with 43% Rheumatologists not using a dedicated ocular screening pathway making monitoring long term potentially hazardous. Alternatives to hydroxychloroquine are not considered by 39% perhaps reflecting paucity of data for mepacrine and chloroquine, especially in circumstances including pregnancy but also cost and lack of availability. Our results suggest a need for standardised hydroxychloroquine monitoring processes including improved ophthalmic screening with Optical Coherence Tomography, a need for more evidence about the potential benefits and hazards of hydroxychloroquine and alternative antimalarials and availability of prescribing guidelines. Disclosure A. Kaul: Consultancies; Dr Kaul has received fees for Advisory Boards for AbbVie, Janssen, Novartis, Lilly. Member of speakers’ bureau; r Kaul has received speaker fees from AbbVie, Novartis, Janssen, Leo, Pfizer. A. Mason: None. C. Edwards: None. E. Vital: None.

P117 Nailfold capillaroscopy: a survey of current UK practice and ‘next steps’ to facilitate generalised uptake

Background/AimsNailfold capillaroscopy has a key role in the assessment of patients with Raynaud’s phenomenon (RP) providing a window of opportunity for the early diagnosis of systemic sclerosis (SSc). Anecdotal evidence indicates that this opportunity is not being fully realised across UK rheumatology centres. Reasons for apparent discrepancies in use of capillaroscopy may relate to a lack of expertise, confidence or equipment. Exploratory work has demonstrated the potential for an internet-based standardised system for clinical reporting of nailfold capillaroscopy images to mitigate current inequities in care provision. The overall aim of this study was to understand current practices in the diagnosis of SSc in UK rheumatology centres with specific reference to identifying barriers to the use of nailfold capillaroscopy. A secondary aim was to understand rheumatologists’ views on a standardised system to facilitate the timely diagnosis of SSc.MethodsAn online survey comprising closed and free-text questions was developed using expert (n = 7) opinion from clinicians, scientists and health service researchers. The survey was piloted (n = 5) and sent to UK-based rheumatologists using established electronic mailing lists between 2nd October 2020 and 8th March 2021. Respondents were asked to describe workloads and practices typically seen before the COVID-19 pandemic. Data were analysed using descriptive statistics and thematic analysis.ResultsSurvey responses were received from 104 rheumatologists representing centres across the UK. Wide variation in terms of workloads and practices were described (See Table 1). Only 41% (n = 43) of respondents reported using nailfold capillaroscopy provided at their centres. Key barriers were access to equipment and a lack of expertise in terms of acquiring and analysing images. Respondents indicated that a centralised internet-based system for storing images and sharing diagnoses would provide access to expertise and the possibility of timely diagnoses. P117 Table 1:Use of nailfold capillaroscopy (NFC) across UK centresNumber (n = 104)%Do you use nailfold capillaroscopy at your site?No6159Yes4341Total104100In what context are nailfold capillaroscopy images taken?At the general clinic appointment2251At a separate hospital appointment1637Other12Either general clinic or separate hospital appointment25Missing/unclear25Is there a dedicated room where imaging is done?No2354Yes1842Unclear/missing25What type of equipment do you use for NFC?Video microscope921Stereomicroscope12USB microscope1228Dermatoscope1330Ophthalmoscope12Stereomicroscope & dermatoscope12Don't know614Who usually does NFC imaging in your centre?I do it myself2047Another consultant or SpR921Nurse/AHP37Technician/medical physics614Medical photography49Clinical scientist12Who usually interprets the NFC imaging in your centre?I do it myself2558Another consultant or SpR819Nurse/AHP25Technician/medical physics512other12Clinical scientist12Technician & consultant/SpR12From how many RP patients do you obtain NFC images?0381 to 5386 to 1092311 to 2061521 to 30410more than 30923Not sure513How many of those patients imaged were diagnosed with SSc?04101 to 516416 to 1082111 to 203821 to 3025more than 3025Not sure410How are results of NFC reported to the patients?Face-to-face at imaging session1126Face-to-face at clinic appointment1433Letter / as part of treatment plan1330No specific nailfold capillaroscopy reporting25Other25Letter / face-to-face12Do you (also) refer patients to other centres for NFC?No6260Yes4240How many patients per year do you refer to other centres?1 to 526636 to 10112711 to 201221 to 3025more than 3012*participants asked to base answers on the situation in 2019 before the COVID-19 pandemicConclusionSubstantial variation in approaches to the diagnosis of SSc across the UK was identified. Potential benefits of a standardised system were described by respondents including the improved diagnosis and management of SSc, realising potential patient benefits and reducing current health inequalities. Survey findings provide evidence to help develop future studies to develop and evaluate the proposed new system.Disclosure M. Eden: None. S. Wilkinson: None. A. Murray: None. P. Gurunath Bharathi: None. C. Taylor: None. K. Payne: None. A.L. Herrick: None.

P087 RCN Rheumatology Nurse Competency Framework a reliable tool to improve quality care and set standards for education of nurses

Abstract Background/Aims We evaluated the RCN Competency Framework for Rheumatology Nurses published in March 2020. The competency aims to support personal development plans, continuing professional development (CPD) and career progression for rheumatology nurses to advanced practice acting as a benchmarking tool, providing a framework to support succession planning and service development, forming the base for a nationwide standard curriculum for training. This evaluation explores rheumatology nurses’ views of the competency, and identify benefits, limitations, and recommendations. Methods We used a sequential research design utilising a questionnaire circulated from 13 March to 25 April 2021 followed by semi-structured interviews between May 2021 and August 2021. Results 106 people responded to the survey, 99 (93%) working as adult rheumatology nurses. There were 55 (52%) band 7 nurses and a wide range of job titles. Most nurses, 93 (87%) had academic qualification at degree or Master’s level. Most respondents 77 (73%) were from England. 74 (70%) found out about the competency via the RCN Rheumatology Nursing Forum Facebook page, or via the BSR website (35%). Most (71%) respondents had their present role for five years or more and 103 (50%) nurses had been in their role for more than 10 years. When asked whether they had used the competency in their practice, 57 (54%) said they had. Reasons for using it were; to provide a framework for learning, to use as a benchmarking tool, for CPD, for teaching, to demonstrate skills and knowledge, when managing others, to show managers how their role can develop. Redeployment due to COVID-19 and workforce issues were the main reason why the competency was not implemented fully. However, using it with new staff was cited as beneficial. Free text comments described very good detail and identification of learning needs, giving good understanding of the underpinning knowledge. 15 nurses responded for interviews and 14 were conducted. The average was 12 minutes totalling 171 minutes. We asked why they used the competency, for any potential strengths or limitations, how much time it took to complete, would they use it again, improvement suggestions, if they would recommend it to others, and whether it was easy to locate. People said a paediatric rheumatology module and an accessible course focussed on leadership is needed. When asked to summarise the competency in five words, one said it was “a reliable tool to improve quality care and set standards for education of nurses”. Conclusion The competency was well received as a strengthening resource for UK rheumatology nurses. We recommended that these competencies are universally adopted. Further dissemination is required and education needs must be addressed. A development framework is planned. Further analysis will be published in 2022. A review of the competency is due in 2023. Disclosure D.M. Finney: Honoraria; DF has received honoraria for education activities from Galapagos. J. Begum: None. T. Cornell: Other; Also employed by Abbvie as Rheumatology Consultant Nurse. L. Howie: None. L. Parker: None. S. Ryan: None. H. Smith: Honoraria; HS has recived educational honoraria from Abbvie. R. Wyllie: None. P. Livermore: None.

POS1472-HPR CLINICIANS’ PERSPECTIVES ON PSYCHOLOGICAL DISTRESS AND MEETING PATIENTS’ SUPPORT NEEDS IN RHEUMATOLOGY CARE SETTINGS

Background:People with inflammatory rheumatic diseases (IRDs) face challenges that include fluctuations in pain, fatigue and flares of disease activity, complex medical regimens, and decisions about when to seek clinical help with symptoms [1,2]. Evidence suggests levels of anxiety and depression are higher in people with IRDs compared to the general population [3]. Rheumatology teams report that psychologically distressed patients can have additional support needs and require more time. Patients’ concerns include health-related anxiety and difficulty accepting the diagnosis. This group can have poor outcomes and poor adherence to treatments. However, little is currently known about optimal ways to meet these patients’ support needs.Objectives:To understand rheumatology clinicians’ perspectives on psychological distress in care settings with the long-term aim to develop a proposed model/pathway of support.Methods:Telephone interviews were conducted with members of UK rheumatology teams who have clinical experience with patients experiencing distress. The semi-structured interviews explored both ‘what happens now’ (current clinical practice) and ‘what should happen’ (acceptable models of future psychological support provision). The semi-structured format provided flexibility to probe more deeply and develop new lines of enquiry based on participants’ responses.Results:Fourteen interviews were conducted with rheumatology clinicians including 2 consultants, 4 nurses, 1 physiotherapist, 4 occupational therapists, 2 clinical psychologists and 1 podiatrist. Inductive thematic analysis was used to analyse the data. Two main themes represent the data (Table 1).Table 1.Main ThemeSub-themes1. ‘No one shoe fits all’ – the many manifestations of distress in patients.‘I pick up on distress as increased emotion…tearfulness and sadness I suppose, but also frustration, anger...A lot of helplessness comments’1. ‘Distress can be quite emotive and quite obvious, but then it can also hide away’2. ‘They’re [patients] trying to manage their own conditions, but they’re also trying to manage life’2. ‘If Rheumatology could be interwoven with psychological principles’ – the need to attend to the psychological impact of IRDs, alongside the physical impact.‘The physical and mental health side of things are so closely linked because one affects the other…after a while they [patients] don’t really know what’s affecting what’1. ‘Prioritising physical health…sometimes the stress gets not thought about’2. ‘Make best use of everyone in the team to work with patients who are struggling’3. ‘For the psychological side of things we don’t measure anything about that at all’Conclusion:Distress can be obvious or hidden and cause issues for both patient and clinician. It can lead to poor engagement with care provision. Clinicians differ in their perceptions of distress and in their thresholds for dealing with distress and have described the inconsistency of support offered for distressed patients. They described the powerful link between physical and mental distress, the vicious cycle that can develop, and the benefits of incorporating a psychological approach to treatment. This study suggests psychological support should be embedded within the team as it is felt there is a need for speciality understanding and for patients’ emotional wellbeing to consistently be given equal priority to their physical wellbeing.

P002 Real-world experiences of biologic tapering

Abstract Background/Aims Biologic therapy and treat to target have significantly improved patient outcomes and we now have a proportion of patients on biologic therapy who remain in clinical remission. NICE guidance suggests “cautiously reducing drug doses or stopping drugs in those who have maintained the treatment target”. Despite this guidance, little is known about current clinical practice of biologic tapering in UK rheumatology centres. We aimed to illustrate current practice and success rates in biologic tapering in a real-world setting in patients with rheumatoid arthritis (RA), psoriatic arthritis (PSA) and ankylosing spondylitis (AS). Methods We identified patients who were potentially suitable for biologic tapering 1 week prior to their follow up appointment using the following criteria - any anti-TNFα biologic ≥ 1 year, RA patients (DAS28 CRP<3.2, CRP normal), PSA patients (no swollen joints, CRP normal, no extra-articular manifestations), AS patients (BASDAI<4, CRP normal). We then analysed how many patients were successfully tapered at one year. Tapering schedule was decided by the supervising rheumatologist. Results From December 2018 to February 2019, 66 patients were identified as being suitable for biologic tapering. 3 patients did not attend and were excluded from further analysis. Tapered group: 20 (32%) patients were tapered. Based on the retrospective review of clinic letters, the “tapering schedule” was inconsistent and the information provided to patients if they flared was also inconsistent - 9 (45%) patients were advised to return to their normal dose and only 1 (5%) patient was advised to contact the helpline. After 12 months of follow up, 11 (55%) patients remained on the tapered dose, 7 (35%) patients returned to their prior dose and 2 (10%) patients were lost to follow up. Non-tapered group: 43 (68%) patients were not tapered. The reasons for not tapering were divided into 6 broad categories: active disease (n = 15, 35%), patient choice (n = 5, 12%), DMARD was tapered instead (n = 5, 12%), discuss at next visit (n = 3, 7%), reason not mentioned (n = 12, 28%), other (n = 3, 7%) Conclusion This Quality Improvement Project has highlighted the inconsistencies in biologic tapering in a UK real-world setting. In response to this inconsistency, we have developed a departmental guideline which provides stringent criteria to identify patients at lowest risk of flaring and standardises a tapering schedule and clinical pathway. We also created a patient information leaflet that could be distributed. Only half of the patients remained on the tapered dose after 1 year, suggesting a significant proportion of patients flare following dose reduction. However, our findings may be limited by small sample size. National guidance and a thorough audit based on this guidance is welcomed. Disclosure Z. Rutter-locher: None. Y. Long Man: None. L. Marsh: None. S. Mercer: None. B. Menon: None. A. Cope: None.

P080 BSR national training survey results for rheumatology and GIM dual-accreditation

Abstract Background/Aims Following the Shape of Training Report, all Rheumatology registrars commencing training from August 2017 are required to obtain dual-accreditation with General Internal Medicine (GIM). Training time increased from 4 to 5 years. Current trainees have expressed concerns regarding the lack of clarity and standardisation of the structure and duration of GIM training, and the impact on Rheumatology experience. Surveys were developed and disseminated by the British Society for Rheumatology (BSR) Trainees' Committee to explore the national GIM experience and expectations of trainees and Training Programme Directors (TPDs). Methods Two surveys were created by trainees, with support from the BSR. Web links were emailed to all UK Rheumatology trainees and TPDs in February 2020, and remained open for three weeks. The surveys covered: Duration of dedicated rheumatology trainingDuration of 'high intensity' GIM training (defined as night shifts with at least 1 in 8 on-calls)Weekly number of GIM clinics and ward roundsGuidance provided to trainees and TPDs on the expected duration and structure of GIM training. Results 73 responses were analysed from dual-accrediting trainees across the UK. 73% of trainees expected 1.5-3 years of dedicated rheumatology training however, 12% of trainees did not expect any dedicated rheumatology years. Similarly, the expected duration of ‘high intensity’ GIM training varied widely from up to 1 year (10%) to 2.5-3 years (30%). 37% of trainees expected to do more than 3.5 years of 'high intensity' GIM training. During a ‘high intensity’ GIM year, 58% of trainees did not do any GIM clinics (some Deaneries count general rheumatology clinics towards GIM), 34% had one GIM clinic and 8% of trainees had three or more GIM clinics per week. Similarly, the number of average weekly GIM ward rounds varied from none (11%) to 3 or more (55%). Only 62% of trainees confirmed they were aware of the number and 'intensity' of GIM years required during their training. Twelve TPDs completed the survey. 72% of TPDs were able to provide specific guidance on the expected duration and structure of GIM training for ST3 applicants in 2020. Despite this, 83% of TPDs felt that further guidance is required on the length of dedicated rheumatology and GIM training. Free-text comments suggested a move away from describing GIM training as ‘low', 'medium' or 'high intensity’. Conclusion The surveys identified a wide national variation in GIM training structure and duration, and dedicated Rheumatology training for dual-accrediting trainees. This inequality has proved concerning for many trainees. TPDs and trainees felt that further information and standardisation is needed regarding the dedicated time required in Rheumatology and GIM. The results will be discussed at the next Joint Royal College of Physician’s Board (JRCPTB) Specialty Advisory Committee meeting. Disclosure S. Khalid: None. M. Chakravorty: None. C. Godsave: None. S. Yaqub: None. E. Davies: None. M. Rutter: None. S. Shabbir: None. E. Reilly: None.

BSR guideline on the management of adults with systemic lupus erythematosus (SLE) 2018: baseline multi-centre audit in the UK

Abstract Objectives To assess the baseline care provided to patients with SLE attending UK Rheumatology units, audited against standards derived from the recently published BSR guideline for the management of adults with SLE, the NICE technology appraisal for belimumab, and NHS England’s clinical commissioning policy for rituximab. Methods SLE cases attending outpatient clinics during any 4-week period between February and June 2018 were retrospectively audited to assess care at the preceding visit. The effect of clinical environment (general vs dedicated CTD/vasculitis clinic and specialized vs non-specialized centre) were tested. Bonferroni’s correction was applied to the significance level. Results Fifty-one units participated. We audited 1021 episodes of care in 1003 patients (median age 48 years, 74% diagnosed >5 years ago). Despite this disease duration, 286 (28.5%) patients had active disease. Overall in 497 (49%) clinic visits, it was recorded that the patient was receiving prednisolone, including in 28.5% of visits where disease was assessed as inactive. Low documented compliance (<60% clinic visits) was identified for audit standards relating to formal disease-activity assessment, reduction of drug-related toxicity and protection against comorbidities and damage. Compared with general clinics, dedicated clinics had higher compliance with standards for appropriate urine protein quantification (85.1% vs 78.1%, P ≤ 0.001). Specialized centres had higher compliance with BILAG Biologics Register recruitment (89.4% vs 44.4%, P ≤ 0.001) and blood pressure recording (95.3% vs 84.1%). Conclusions This audit highlights significant unmet need for better disease control and reduction in corticosteroid toxicity and is an opportunity to improve compliance with national guidelines. Higher performance with nephritis screening in dedicated clinics supports wider adoption of this service-delivery model.

Estimation of the burden of shielding among a cross-section of patients attending rheumatology clinics with SLE-data from the BSR audit of systemic lupus erythematosus.

ObjectivesWe aimed to estimate what proportion of people with SLE attending UK rheumatology clinics would be categorized as being at high risk from coronavirus disease 2019 (COVID-19) and therefore asked to shield, and explore what implications this has for rheumatology clinical practice.MethodsWe used data from the British Society for Rheumatology multicentre audit of SLE, which included a large, representative cross-sectional sample of patients attending UK Rheumatology clinics with SLE. We calculated who would receive shielding advice using the British Society for Rheumatology’s risk stratification guidance and accompanying scoring grid, and assessed whether ethnicity and history of nephritis were over-represented in the shielding group.ResultsThe audit included 1003 patients from 51 centres across all 4 nations of the UK. Overall 344 (34.3%) patients had a shielding score ≥3 and would have been advised to shield. People with previous or current LN were 2.6 (1.9–3.4) times more likely to be in the shielding group than people with no previous LN (P < 0.001). Ethnicity was not evenly distributed between the groups (chi-squared P < 0.001). Compared with White people, people of Black ethnicity were 1.9 (1.3–2.8) and Asian 1.9 (1.3–2.7) times more likely to be in the shielding group. Increased risk persisted after controlling for LN.ConclusionOur study demonstrates the large number of people with SLE who are likely to be shielding. Implications for clinical practice include considering communication across language and cultural differences, and ways to conduct renal assessment including urinalysis, during telephone and video consultations for patients who are shielding.

National survey of the current clinical practices of the UK rheumatology physiotherapists: A short report.

National survey of the current clinical practices of the UK rheumatology physiotherapists: A short report.

Psychological and self-management support for people with vasculitis or connective tissue diseases: UK health professionals’ perspectives

ObjectivesCTD and systemic vasculitis impact on health-related quality of life. Treatment can be complex, involving multiple medical specialities. The aim of this study was to investigate psychological and self-management support for patients in secondary care.MethodsAn online survey of health professionals in the UK, including 45 multiple-choice and free-text questions, was analysed descriptively. Free-text survey responses were analysed thematically to identify health professionals’ perceptions of best practice and unmet needs.ResultsThe online survey included 120 health professionals (34% specialist nurses, 51% doctors and 12% allied health professionals), predominantly working in rheumatology (52.9%) and nephrology (21.5%) departments. Access to self-management programmes or clinics for people with CTD or vasculitis was available in 23% of rheumatology and 8% of nephrology departments. In response to ‘How well is your team providing self-management support to people with CTD or vasculitis?’, 38% of respondents reported ‘not very well’ or ‘not well at all’. Direct access to psychological support was available in 76.9% of nephrology and 32.8% of rheumatology departments. More than 80% of respondents would like additional training. Key themes from the qualitative data (free-text survey responses) included the importance of: dedicated psychological support and self-management programmes for people with CTD and vasculitis, a whole-team approach (specialist teams empowering people to manage their own care), staff training (e.g. brief psychological interventions) and signposting to resources, including patient charities.ConclusionPeople with CTD and vasculitis have complex needs, and improvements in self-management and psychological support are required in UK rheumatology and nephrology departments.

081 Adrenal insufficiency secondary to corticosteroid use: an audit from a UK rheumatology centre

081 Adrenal insufficiency secondary to corticosteroid use: an audit from a UK rheumatology centre

Management of gout by UK rheumatologists: a British Society for Rheumatology national audit.

To assess the concordance of gout management by UK rheumatologists with evidence-based best-practice recommendations. Data were collected on patients newly referred to UK rheumatology out-patient departments over an 8-week period. Baseline data included demographics, method of diagnosis, clinical features, comorbidities, urate-lowering therapy (ULT), prophylaxis and blood tests. Twelve months later, the most recent serum uric acid level was collected. Management was compared with audit standards derived from the 2006 EULAR recommendations, 2007 British Society for Rheumatology/British Health Professionals in Rheumatology guideline and the National Institute for Health and Care Excellence febuxostat technology appraisal. Data were collected for 434 patients from 91 rheumatology departments (mean age 59.8 years, 82% male). Diagnosis was crystal-proven in 13%. Of 106 taking a diuretic, this was reduced/stopped in 29%. ULT was continued/initiated in 76% of those with one or more indication for ULT. One hundred and fifty-eight patients started allopurinol: the starting dose was most commonly 100 mg daily (82%); in those with estimated glomerular filtration rate <60 ml/min the highest starting dose was 100 mg daily. Of 199 who started ULT, prophylaxis was co-prescribed for 94%. Fifty patients started a uricosuric or febuxostat: 84% had taken allopurinol previously. Of 44 commenced on febuxostat, 18% had a history of heart disease. By 12 months, serum uric acid levels ⩽360 and <300 μmol/l were achieved by 45 and 25%, respectively. Gout management by UK rheumatologists concords well with guidelines for most audit standards. However, fewer than half of patients achieved a target serum uric level over 12 months. Rheumatologists should help ensure that ULT is optimized to achieve target serum uric acid levels to benefit patients.

Recipients\u2019 and providers\u2019 perspectives of obesity and potential barriers to weight management programmes in patients with Rheumatoid Arthritis (RA): a qualitative study

BackgroundThe UK rheumatology community serves an ageing and ethnically diverse population, with a growing public health concern about obesity. Overweight and obesity contribute to 2.8 million preventable deaths annually. A raised Body Mass Index (BMI) in those with Rheumatoid Arthritis (RA) can have a significant negative impact on clinical outcomes. The aim of the study was to examine patients’ and providers’ perceptions of obesity and potential barriers to participation in a future weight management programme to contribute to an appropriate intervention design.MethodQualitative semi-structured interviews were carried out with 11 patients with RA and one focus group was held with 8 members of a multi-disciplinary team working in one Rheumatology outpatient clinic. Framework analysis (FA) contributed to the inductive thematic analysis, and was employed to assist with the identification of the emergent codes and final themes.ResultsThree core themes were ascertained from the semi-structured interviews: i) The psychosocial impact of living with RA and obesity, ii) Challenges of living with RA and obesity and iii) Considerations for future weight management programmes. The Focus group analysis also identified three core themes: i) Micro-dynamics between patient and provider, ii) The relationship between the provider and the host institution in relation to the development of a future weight management programme and iii) The social and political context of obesity as a public health concern.ConclusionPerceptions of obesity and weight gain and associated barriers to participating in weight management programmes, differ significantly between patients and providers. Patients, require a holistic approach to weight management by clinicians and the acknowledgement of the significant psychosocial impact of a dual diagnosis of RA and being overweight or obese. In contrast, providers seem reluctant to address weight increase with patients and require education and support at an individual and institutional level to integrate weight management into routine care.