Rheumatology Service Research Articles

Current status of musculoskeletal ultrasound in Colombian rheumatology

IntroductionUltrasound is very useful in the management of rheumatological pathology today. Despite this, in Colombia, progress towards its implementation is limited and entails great difficulties. This deficit is also related to the difficulties in training new human talent. In Colombia, there is no study that identifies the current status of ultrasound among rheumatologists in the country. MethodsThis is a descriptive cross-sectional study where medical specialists in Rheumatology practising in Colombia were surveyed through an online form. They were asked about general aspects and for their opinion regarding ultrasound in rheumatology and, if they practiced it, they were asked about specific aspects of its application in clinical practice. Additionally, questions were asked of the rheumatologists who are part of the specialist training processes in the country. Closed multiple-choice or Likert scale assessment questions were presented as required. The main objective was to describe the current use and opinion of musculoskeletal ultrasound in Colombian rheumatologists, as well as the limitations for its implementation. Frequency measurements were performed of the categorical variables of nominal type and ordinal type. The intention was to survey all rheumatologists in the country, who according to Colombian Society of Rheumatology data for the end of 2019 totalled 186. ResultsTaking into account the number of rheumatologists of the Colombian Association of Rheumatology (Asoreuma) for 2019 totalling 186, a participation of 139 specialists (74.7%) was obtained, of which 22 of the respondents performed ultrasound in their daily practice (15.8%) the majority in this group being trained in Colombian territory (80.6%). Of the 139 respondents, 64.7% have received some type of training in ultrasound, generally pre-congress courses (22.5%), EULAR courses (16.7%) and training included in their residency curriculum outside the rheumatology service (9.8%). The acceptance of ultrasound is high among rheumatologists practicing in Colombia, 75.5% consider it important or very important and 84.9% indicated that for a comprehensive rheumatology service it is important or very important to have ultrasound. From the responses, however, they consider that its use could change their behaviour frequently, and very frequently in less than half of the cases at 46.7%. Regarding the opinion on the use of ultrasound in specific pathologies, rheumatoid arthritis (77.7%) and crystal arthropathies (72.7%) were considered the highest and most important, as well as in the performance of procedures at 87%. For decision-making in the inflammatory pathology study, 60.4% would consider performing ultrasound compared to 28.8% who responded MRI. Regarding the limitations for implementation, the lack of training in the country (25.6%), followed by the lack of resources to procure equipment (17.9%) and ignorance and lack of interest on the part of the health entities (17.1%) were the most recognized. ConclusionMusculoskeletal ultrasound is only practiced by a minority of rheumatologists practicing in Colombia, even though the majority consider it important. Its importance lies in its use to treat patients with rheumatoid arthritis, crystal arthropathies and psoriatic arthropathy, as well as for the performance of procedures. More than half of the rheumatologists have received some type of training in ultrasound, usually very few hours’ education and without practical or informal training, this being the main problem for its implementation.

The occurrence of depressive symptoms in rheumatoid arthritis: A cross-sectional study

Background/Aim. Depression, as a common comorbidity in patients with rheumatoid arthritis (RA), has been found to affect the disease diagnosis and treatment response. Accordingly, the aim of the study was to investigate the occurrence of depressive symptoms among patients with RA and the association between RA and depression. Methods. The cross-sectional study included 69 patients with RA. The depressive symptoms in patients with RA were assessed using the Beck Depression Inventory (BDI), and RA activity was measured by Disease Activity Score-28 for RA with erythrocyte sedimentation rate (DAS28-ESR) and Clinical Dis-ease Activity Index (CDAI). Results. It was found that 42% of respondents reported having depressive symptoms of different severity, among which the majority (23.2%) presented with mild symptoms. A mild positive correlation was found between the BDI and the DAS28-ESR (r = 0.39 p = 0.001), as well as between the BDI and the CDAI (r = 0.40 p = 0.001). Place of residence (t = -2.14 p = 0.03) and employment status (t = -2.81 p = 0.00) associated with depressive symptoms were also found to have statistically significant differences within the group of respondents. In addition, age had a positive correlation with the disease activity, as well as the place of residence and employment status. Conclusion. It has been observed that depressive symptoms in patients with RA were associated with disease activity, employment status, and place of residence. Therefore, there is an important need for integrating rheumatologic and mental health services for future research toward a better understanding of both depression and RA.

Arthritis and Health Related Quality of Life in Adult Outpatients in Trinidad: A Cross Sectional Study

ABSTRACT Objectives Arthritis is a major public health concern due to the high prevalence reported globally and its impact on health-related quality of life (HRQOL). The main objectives of this study were to determine the prevalence of self-reported joint pain in Trinidad, arthritis and its associations with HRQOL in a Trinidadian primary care population. Method A cross-sectional study was conducted on adult primary care attendees from 16 randomly selected centres during the period January to June 2016 using an interviewer administered de novo questionnaire. Data was analysed using Statistical Package for the Social Sciences for predictors of HRQOL. Results Of 421 subjects approached, 392 (93%) completed this survey. The average age was 46 ± 17.8 years with 60.5% of respondents being female and 75% being of either East Indian or African descent. Joint pain in the past 6 months, reported by 57.9% of participants, was associated with older age (P <0.001), female gender (P = 0.016), East Indian descent (P = 0.001) and unemployment (P <0.001) Joint swelling was reported by 48% of those who reported joint pain (28% of entire sample). A self-reported diagnosis of Chikungunya related arthritis, osteoarthritis, lupus, rheumatoid arthritis, and gout was made by 12.0%, 9.8%, 9.3%, 7.6% and 1.3% of the sample, respectively. There was significant (P <0.005) upset in all domains of quality of life in those with joint pain. Conclusion One third of adult primary care attendees reported arthritis with upset in all HRQOL domains. These findings lend support for the improvement in rheumatology services in this setting. Keywords: Arthritis, Trinidad, Quality of life, Joint pain

Status and ways to improve the rheumatological service of Kazakhstan

Status and ways to improve the rheumatological service of Kazakhstan

Patient Clinical Outcomes in Standalone Versus a Combined Ophthalmology-rheumatology Uveitis Clinic

BackgroundTo evaluate uveitis care outcomes in standalone versus a combined ophthalmology-rheumatology clinic.MethodsParticipants were patients aged 18 years and older with a minimum 12-month history of chronic uveitis prior to being referred to the combined uveitis clinic at Kresge Eye Institute and who were treated in the combined clinic for at least 6 months. Best corrected visual acuity (BCVA), objective markers of inflammation, and achieving targeted dose of immunomodulatory therapy (IMT) were compared in the cohort of uveitis patients 6 months prior to and after the initial evaluation in the combined clinic.ResultsSixty-six percent of study participants were female with a mean age of 51.5 years. BCVA improved from 0.58 logMAR (Snellen: ~20/74) at the initial combined clinic visit to 0.50 logMAR (Snellen: ~20/63) 6 months after the first combined visit (p = 0.0137). The establishment of the combined uveitis clinic led to higher frequency of patients at target dose of IMT: an increase from 49.0% at 6 months prior to the combined visit to 70.1.4% and 79.8% at the initial combined visit and 6 months after the combined visit, respectively.ConclusionA combined model of management for chronic uveitis patients wherein rheumatological services are coupled with ophthalmic care leads to improvement in patient clinical outcomes and achieving target therapy.

Doctors' views on the impact of the absence of an in-person rheumatology service at a major New Zealand hospital.

To describe the views of doctors in one hospital service about the impact of the lack of an in-person rheumatology consultation service and to identify service improvements informed by those views and services at comparable district health boards (DHB). Qualitative study using focus groups of resident and senior medical officers (RMOs and SMOs) from the general medical service at Wellington Regional Hospital. A national survey of DHB heads of rheumatology was also used. Three major categories emerged from the focus groups with 16 RMOs and 15 SMOs: 1) a negative impact on quality of patient care, which is inequitable to other nearby DHBs; 2) workarounds are found; and 3) doctors' knowledge of rheumatology and education opportunities suffer. Best practice was considered to be an in-person rheumatology consultation service, as offered at the six DHBs surveyed. Lack of an in-person rheumatology consultation service in this large hospital had perceived negative impacts on patient care and doctors' education and competence. Providing an in-person consultation service seems highly desirable but would need more rheumatology capacity regionally. The themes identified may also be relevant to other hospital or specialist services that are not equitably accessible in other parts of the New Zealand health system and thus inform the transformation of the health system required by the Pae Ora (Healthy Futures) Bill 2022.

84 Methotrexate toxicity in a patient with Takayasu arteritis; a case report

BackgroundMethotrexate is an antimetabolite commonly used as a chemotherapeutic and as a steroid sparing agent in multiple rheumatologic conditions. The common side effects are well documented and usually seen in patients receiving high dose therapy and hence more commonly seen in oncology. Here, we discuss a case on methotrexate toxicity in a patient being treated for Takayasu arteritis.MethodsThis was a retrospective case reviewResultsA seventeen-year-old was seen in the rheumatology service with a diagnosis of Takayasu arteritis after being initially worked up due to hypertension. Methotrexate therapy was started at an initial dose of 25 mg to be taken weekly. She was later seen in the pediatric out-patient unit 10 days post initiation of therapy with a history of inability to feed due to oral sores and severe abdominal pain. She also complained of odynophagia and hence had poor oral intake. On further history, it was noted that the patient was taking the medication on a daily basis as opposed to the prescribed weekly regimen. On exam, she was noted to have extensive ulceration of her buccal mucosa, gingiva and tongue. She was also found to have severe epigastric tenderness. Her genital regions were however spared. A diagnosis of methotrexate toxicity was made and she was admitted to the high dependency unit for management. Methotrexate was immediately discontinued and a hyper hydration regimen was initiated with intravenous fluids (125 ml/m2/h). Her pain was managed with an intravenous morphine infusion. Particular care was taken to avoid drugs such as proton pump inhibitors (PPIs), non-steroidal anti-inflammatory drugs (NSAIDs) and Sulphur containing drugs. A rescue was initiated with 15 mg/m2 of folinic acid given 6 hourly. The patient made a full recovery and was discharged 4 days later.Discussion and ConclusionsMethotrexate is a drug with varied and severe adverse effects. Toxicity with methotrexate affects multiple systems and can cause end organ damage. It is therefore of paramount importance to recognize toxicity early and manage appropriately before onset of end organ damage. The above patient was risk of hepatotoxicity, renal toxicity, Neurologic toxicity, methotrexate induced lung injury, hematologic toxicity and hypersensitivity. She developed mucositis as a result of the medication.Enhancing renal elimination of the drug is at the core of management. This can be done with hyperhydration, alkalinisation of urine and avoiding drugs that slow elimination of methotrexate such as PPIs, NSAIDs, tyrosine kinase inhibitors, sulfa drugs and penicillin like drugs. Once end organ damage is established, therapy is supportive and highly dependent on the organ systems involved and the extent of injury.It is necessary for clinicians to be well versed with the adverse effects expected with methotrexate as evidenced by this case for prompt diagnosis and sound management. It is also vital to counsel patients and parents about the medication- correct dosage and timing, expected adverse effects and when to seek medical attention.

Factors associated with asymptomatic vertebral fractures in patients with rheumatoid arthritis in a rheumatology service in Bogotá (Colombia)

IntroductionIn patients with rheumatoid arthritis (RA), osteoporotic vertebral fractures (OVF) are of multifactorial etiology. The main mechanism is spontaneous and therefore most are asymptomatic. The presence of VF has an impact on the quality of life of patients, and consequently on morbidity and mortality, therefore it should be systematically evaluated in this population, especially when associated factors have been reported. The main objective of this study was to identify clinical characteristics for osteoporosis and poor prognosis in rheumatoid arthritis that could be associated with the development of osteoporotic vertebral fractures identified in the lateral chest X-ray of asymptomatic patients with RA. The secondary objectives were to present the frequency, location, and severity of the fractures, as well as the inter and intra-observer correlation, when analyzing the radiographs. MethodologyPatients with a diagnosis of RA were included, with a lateral chest X-ray and indication dissimilar to spinal symptoms. The mean age was 58 years (IQR 21–88). Three researchers evaluated 151 images in a sequenced and standardized manner using the Algorithm-Base Qualitative approach (ABQ) and Genant methods. Variables associated with the presence of osteoporosis and poor prognosis in RA were identified. Subsequently, a multivariate analysis was carried out to find an association with the presence of VF in this population. ResultsWe found 39 fractures in 32/151 patients. Identifying multiple fractures in 5 of them. The prevalence of osteoporotic vertebral fractures was 21.2%. The distribution of fractures was mainly at the level of T5, T8 and T9, with a predominance of Genant grade 1 in 46%. In the multivariate analysis, age, duration of RA (mainly greater than 10 years), rheumatoid factor, anti-citrullinated peptide antibodies, DAS28, HAQ, presence of antinuclear antibodies (ANA), smoking and being under treatment for osteoporosis showed a statistically significant association. The interobserver correlation for the ABQ and Genant methods presented a kappa index of .9 and .92, respectively. ConclusionIn patients with RA there is a significant association with the development of VF, independent of the presence of osteoporosis. Furthermore, this research suggests that the presence of some clinical and paraclinical characteristics could be associated with the prevalence of osteoporotic vertebral fractures. Age, duration of arthritis, poor prognostic markers for RA in terms of serology and functionality, as well as being in treatment for osteoporosis had statistical significance of association. This should guide the timely detection of fractures, independent of symptoms, with the respective targeted treatment in this population and thus avoid functional complications and a decrease in quality of life.

Women in rheumatology in Africa.

Despite the increasing occurrence of rheumatic diseases worldwide, there is poor access to rheumatology services and few rheumatologists to provide these services in many regions of the world. This fact is particularly true in areas of lower socioeconomic status and low-income and middle-income countires. Studies across various countries show a relative shortage of rheumatologists compared with the rising need for the specialty worldwide.1,2

Type I interferon signature as a possible new marker for stratification of patients with juvenile idiopathic arthritis.

The interferon score (IS) quantifies the expression of interferon-stimulated genes in peripheral blood, providing an indirect estimate of interferon-mediated inflammation in rheumatological disorders. This study explores the clinical significance of IS among a cohort of patients affected by juvenile idiopathic arthritis (JIA) and its relevance to disease stratification and prognosis. All patients referred to the Rheumatology Service of the Institute for Maternal and Child Health IRCCS Burlo Garofolo, Trieste, Italy, with a diagnosis of JIA (2001 ILAR criteria) were consecutively recruited. Systemic JIA was excluded. Demographic, clinical and laboratory data were collected for each patient in a structured database. Categorical variables were expressed as numbers (%) and compared by the χ2 test or Fisher's exact test. Principal Component Analysis (PCA) was performed with clinical and laboratory data. Forty-four patients were recruited (35 F, 9 M): 19 polyarticular, 13 oligoarticular, 6 oligoarticular-extended, 5 psoriatic and 1 enthesitis-related arthritis. Sixteen had a positive IS (≥3). Increased IS correlated with a higher number of involved joints ≥5 (p=0.013), increased erythrocyte sedimentation rate (ESR) (p=0.026) and hypergammaglobulinaemia (p=0.003). PCA highlighted a subgroup of patients who shared high levels of IS, ESR, C-reactive protein, hypergammaglobulinaemia, JADAS-27, polyarticular involvement and family history of autoimmunity. Although based on a small case series, our results may support the role of IS in better defining a subgroup of JIA subjects with stronger autoimmune features. The possible relevance of these results for therapeutic stratification remains to be explored.

The long-term outcome of New Zealand Maori and Pacific Island children diagnosed with childhood onset lupus nephritis.

To determine the long-term outcome of Maori and Pacific Island children diagnosed with childhood onset lupus nephritis. A chart review was conducted of children diagnosed with biopsy proven lupus nephritis seen by the Starship Hospital and Kidz First paediatric rheumatology and/or Starship renal services between January 1992 and January 2018. Baseline and follow-up kidney histology, adherence and response to therapy including partial or full renal remission, refractory disease, end-stage kidney disease (ESKD) and mortality were determined. In a New Zealand cohort of 42 with childhood onset lupus nephritis, Maori and Pacific Island children were significantly more likely to develop class 4 lupus nephritis (RR (95% CI), 11.3 (3.84-49.9), p < 0.0001), demonstrate medication nonadherence (RR (95% CI) 12.4 (3.48-85.7), p < 0.0001) and experience end stage kidney disease (RR (95% CI) 15.7 (2.97-389.3), p = 0.0003) and mortality (RR (95% CI) 11.1 (1.91-280.1), p = 0.005) compared to non-Maori and Pacific Island children. In addition, Maori children with childhood onset lupus nephritis developed chronic histological changes significantly more rapidly than Pacific or Asian children (p = 0.038). Lupus nephritis is more common among Maori and Pacific Island children in New Zealand associated with a significant incidence of end stage kidney disease and mortality, with some Maori children developing rapid histologic disease progression.

P56 Involvement of young people in adolescent and young adult rheumatology services and research

Introduction/BackgroundThe Barbara Ansell National Network for Adolescent Rheumatology (BANNAR) was established in 2012. Survey results from within the paediatric and adolescent rheumatology community at this time, highlighted the lack of young people’s involvement in rheumatology research, beyond the role of study participant. Following research to determine the young person’s perspective of research and how they wanted to be involved, Your Rheum, a national young person’s advisory group, for 11-24 year olds diagnosed with a rheumatic condition, was formed in 2016.Description/MethodAim: to assess the current involvement of young people in rheumatology research and service delivery. A questionnaire was created using Microsoft Office online forms and emailed to all BANNAR members (n = 105). Topics included demographics, youth involvement panels and Your Rheum.Discussion/Results23 responses were received (21% response rate), representing 18 rheumatology centres across the UK including 15 tertiary paediatric and adolescent rheumatology centres. The majority of respondents were Consultants (n = 18). Over half of respondents (n = 16) work in centres involved in rheumatology research.15 centres reported having a hospital-wide youth forum/advisory panel, which they promote amongst young people within their services. However, nearly all respondents reported no specific youth advisory panel for rheumatology services. Young people are actively involved in a number of areas within clinical rheumatology services (table 1), however patient satisfaction surveys were the most commonly reported. Moreover, young people are involved in aspects of rheumatology research (table 1), although this was primarily as research participants.P56 Table 1:What aspects of your CLINICAL rheumatology service do young people actively participate in currently? CountPatient satisfaction surveys10Service design and development8Recruitment and interviewing of new clinical staff5Training of health professionals2Undergraduate education1Reviewing local service provision against criteria other than the You're welcome criteria1Other, (development of app)1What aspects of your rheumatology RESEARCH do young people actively participate in? CountResearch participants in relevant projects9Developing protocols5Membership of an advisory board5Design of interventions4Setting the research agenda3Recruitment and interviewing of new research staff who will have direct contact with young people3Dissemination of results3Co-researchers3Over half of respondents (n = 14) have not worked with Your Rheum. Most recruit young people to get involved in the group (n = 16), however, only three respondents said they do this routinely. Common barriers to promoting Your Rheum were: lack of time in consultations; forgetting; lack of interest from the young person(s); no designated member in clinic to discuss Your Rheum with young people.Key learning points/ConclusionThere remains a need to support youth involvement strategies at a local level as well as nationally via Your Rheum. The recent introduction of a Your Rheum animation (https://bit.ly/yourRHEUM) will hopefully support future recruitment.

P08 A multi-disciplinary approach to treating young patients with Complex Regional Pain Syndrome (CRPS)

Introduction/BackgroundThe Rheumatology service provides outpatient assessment and rehabilitative intervention for CYP with inflammatory/non-inflammatory pain conditions across South London and Southeast England.CRPS remains poorly understood condition. Young people experience persistent severe and debilitating pain. The service receives approximately 20 referrals per annum, a figure increasing year-on-year.Early recognition and intervention is key for successful outcomes, but referrals to specialist services may be delayed months from onset of symptoms.No current national pathway to manage CRPS for paediatric patients.The team are aiming to identify “gold standard” intervention for CYP with CRPS, using existing models. matching resource to need.Description/MethodExact cause of CRPS unknown.Injury sometimes trigger, but not 1/10 cases.More common in women.1.2/100,000 CYP (5-15 years old) in the UK; 15,000 new adult cases in adults pa (1 in 3,800).Diagnosis mainly clinical. No specific test confirms CRPS. Mainly based on symptoms and physical examination.Symptoms include:usually single limb, can be widespreadpain (particularly allodynia), hypersensitivity, altered sensationskin changes around affected area, e.g. sensitive to touch, change in temperatureswelling of limbshair & nail growthfunctional impactincreased sweatingstiffnessincreased anxiety, lower mood, depressionmuscle weaknessDifficult to treat – no single treatment availableDuration of intervention varies from few weeks (mild cases) to indefinitely in some.CRPS can impact on activities of daily living, mobility, school attendance, sleep, mood.Early diagnosis and intervention is key.Imperative need for MDT approach; enables CYP to start to live alongside pain and develop control over their lives.CASE STUDY - 14FPast Medical History = DDH and Perthes of L hip; last surgery October 2020 (metalwork removed)2021 - Presented with significant pain, numbness and restricted movement in left leg. Admitted locally for 6-day investigation. Labelled “very complex”. No improvement upon discharge.Limited mobility – using wheelchairReduced school attendance (30%)Not wearing shoe/sock (left foot)Limited socialisationAffecting mood and mental well-being2022 Referral to RhEveAttended ELCH One-Stop Clinic; met RheumatologistReassurance, understanding and validation + robust diagnosis of CRPSReferred to Physio/OT for interventionSeen within 1/52 by Physio/OTRepeated CRPS messages – ensured understanding; reassurance that team “know” how to treat; not complex for us!Focus not on “fixing” painUse of breathing/distraction techniques; encouraged weight-bearing, movement, desensitisation and mobilityDiscussion/ResultsCASE STUDY INTERVENTION OUTCOMES [after one x 2 hour therapy session]:Touching own legNoticed colour change in L leg/footActively started to move toesTook partial weight through L heel using crutchesNegotiated stairsReported to feel “confident” enough to be able to work on strategies at homeTrialled wearing a soft shoe on her L footLearnt breathing techniques and was able to use distractionAble to set some functional goals, e.g. school attendance, playing football, seeing friendsFrom our extensive experience, we understand that:Intervention begins with the individual) - “Being healthy is more than just not being ill - it's about our physical, mental and emotional wellbeing”MDT approach is the most successful treatment for CRPS.This patient group demands a great deal of resource (e.g. clinics, inpatient admissions, therapy intervention time, liaison between ELCH and local teams)A confident, robust diagnosis is essential to support the young person and family in engaging with treatment intervention, moving from pre-contemplation to contemplation stage of changeThe CYP & their family must understand the diagnosis and show readiness for rehabilitation in order to move to the preparation stage of changeTherapeutic intervention is most likely to be successful when the patient has engaged with treatment and has started to gain control of their symptoms, thereby moving from preparation towards actionOur hypothesis is that by being aware of the stages of change and delivering interventions at the “correct” time the team can facilitate improved and quicker outcomes with the patient’s rehabilitation.Key learning points/ConclusionThe young people that we see:Need confident & robust diagnoses delivered with empathyBenefit from time and space to process complex diagnosesGain from continual opportunities for learning and asking questionsDeserve to feel listened to, and receive reassurance and validation with empathy and compassionThe need for a tailored approach for each individual CYP as each individual’s needs differ! Clinicians need to be flexible, e.g. duration and timings of appointmentsValue multi-disciplinary working – this is also an opportunity for clinicians to learn and feel supportedWe have a responsibility to provide learning opportunities and mentoring/support to local network colleaguesWHAT NEXT? To potentially develop National guidelines for Child and Young Person (CYP) with other stake holders.

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

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

P64 Accurate incidence and prevalence estimates are important for families of children with juvenile idiopathic arthritis

Introduction/BackgroundJuvenile Idiopathic Arthritis (JIA) is a heterogenous group of autoimmune disorders characterised by chronic joint inflammation, affecting children and young people (CYP) under the age of 16. Recent analysis in the UK [1] has provided an update to the estimated incidence and prevalence of JIA.Whilst the policy and health-care benefits of accurate incidence and prevalence rates are understood, this patient- and parent-led qualitative project sought views from parents of CYP with JIA to understand whether knowing accurate estimates of incidence and prevalence are important to them.Description/MethodParents of CYP with JIA, all members of a small online group on social media, were asked whether knowing accurate rates of JIA were important to them, and why. Responses were collated and summarized.Discussion/ResultsWhilst a few respondents felt it did not matter to them what the overall rates of JIA were, focusing instead on their own personal experience with the condition, the majority did want to know and gave consistent reasoning.They advised that, when your child is diagnosed with JIA, it is a very isolating experience. Most people have never heard of the condition before, and being told your child has arthritis is a frightening time (especially if you then become aware of some of the significant long-term effects, such as potential continuation of disease into adulthood and possible joint damage, and the side effects of treatment, and social impacts of the disease [2, 3]. Whilst direct support is available to families affected by JIA (www.jarproject.org/hope), understanding prevalence rates can help reduce mental health burdens on patients and parents and reduce feelings of isolation.Families also advised that they want to know numbers of children with JIA so we collectively can get a better understanding of the cause, the trends, and the possible reasons behind changes. Knowing accurately the numbers of children with JIA can help to raise awareness; current lack of awareness in society and primary care contributes to delays in diagnosis and potentially worse clinical outcomes [4]. In addition they reported the need for appropriate resourcing of paediatric rheumatology and support services, and the political and financial discussions that must take place to enable that to happen need to be supported by evidence.Key learning points/ConclusionOverall, parents do want to know how many other children have JIA. It takes some of the isolation and anxiety away to know you are not alone. It matters because knowing there are other parents in the same situation as you can help reduce anxiety and loneliness. It matters, because knowing there are researchers focussing on JIA helps remind you that work is underway to better understand JIA, its causes, and improved treatments which will eventually lead to improved care for children with the condition. It matters, because it can help target resources appropriately. It matters, because raising awareness is more effective if we know how many people are affected by a chronic condition. And it matters, because as improved treatments are developed we want to be able to see the number of children categorised as having active JIA to reduce and health outcomes for each child to improve.

OA17 An evolving case of Anti PM/Scl Anti body associated Aggressive Systemic Sclerosis

OA17 An evolving case of Anti PM/Scl Anti body associated Aggressive Systemic Sclerosis

P67 PIMS-TS MDT – where do we go from here?

Introduction/BackgroundFollowing first reports of paediatric inflammatory multisystem syndrome temporally associated with COVID-19 (PIMS-TS) in April 2020, services have rapidly been developed to manage these patients. In our tertiary paediatric rheumatology service a daily virtual PIMS-TS multidisciplinary (MDT) team meeting was set up in January 2021. This meeting facilitates discussions between the tertiary centre (routinely including paediatric rheumatology and infectious diseases/immunology teams) and general paediatric teams in district general hospitals (DGHs) and within our centre. The aim of this project was to evaluate the service and understand general paediatric opinion in order to consider the future direction of the meeting.Description/MethodWe looked at a one month period after meetings were initiated and compared it with a one month period a year later (February 2021 and February 2022) to define patient numbers and outcomes. Alongside this we constructed an online survey aimed at general paediatricians to determine opinion of the current structure of the MDT and how it may be developed in the future. The survey was sent to general paediatricians within our own centre and in the eleven DGHs falling within our region. Results were analysed descriptively.Discussion/ResultsDuring February 2021, 19 new referrals were discussed within the PIMS-TS MDT; each referral was discussed for a median of 5 days (interquartile range (IQR) 3–6 days). Of these, 11/19 (58%) had a final primary diagnosis of PIMS-TS and 5/19 (26%) patients were transferred for tertiary care (of whom 4/5 (80%) had PIMS-TS). In February 2022, 14 new referrals were discussed for a median of 2.5 days (IQR 2–5.75 days). Of these, 3/14 (21%) had a final diagnosis of PIMS-TS and 2/14 (14%) were transferred for tertiary care (of whom neither had PIMS-TS).We received responses from 20 general paediatricians covering 9/11 (82%) DGHs within our region plus our own centre. Most clinicians had discussed up to 6 patients in the meeting (9/20 (45%) 1-3 patients; 9/20 (45%) 4-6 patients; 2/20 (10%) >6 patients). All clinicians felt the MDT helped facilitate appropriate diagnostic work-up and treatment decisions. 18/20 (90%) felt that the meeting helped avoid unnecessary tertiary paediatric transfers. Interestingly, 9/20 (45%) felt that a routine PIMS-TS MDT meant they were more likely to discuss a patient with rheumatology (1/20 (5%) less likely). All clinicians felt the meeting improved care for patients and most felt it increased their confidence in looking after patients with PIMS-TS (19/20, 95%) and was useful for continuing professional development/training experience (19/20, 95%).Considering the future direction of the meeting, all clinicians felt it should be continued but most (16/20, 80%) felt it should be aimed at a wider patient group. 11/20 (55%) felt a later time of day would be more convenient (currently 11am). Over half (11/20, 55%) thought it should be combined with a currently separate meeting for acute COVID-19 patients (7/20 (35%) don’t know; 2/20 (10%) no). A minority (4/20, 20%) reported difficulty accessing the meeting.Key learning points/ConclusionAs the initial phase of the pandemic draws to a close and numbers of PIMS-TS cases decline this is important data to reflect on how services can go forward into the next phase. While numbers of PIMS-TS cases reduced, the meeting was still well-used and evolved to include patients with other diagnoses. The survey confirms that most general paediatricians believe it improves patient care and would like the meeting to continue but that review of the format may be helpful. Particular considerations are to broaden the scope of the meeting beyond PIMS-TS, revise the timing and consider how to improve ease of access to the meeting for all.Further work will focus on evaluating patient numbers and diagnoses over the full period of the PIMS-TS MDT and adapting the format of the current MDT in response to the feedback received.

P59 Growing up in rheumatology: An Evaluation of a Young Adult Rheumatology Service

P59 Growing up in rheumatology: An Evaluation of a Young Adult Rheumatology Service

P69 COVID vaccine uptake in young persons on immunosuppression under the care of tertiary paediatric rheumatology service

Introduction/BackgroundCOVID-19 disease, caused by SARS-CoV-2 virus, first emerged as a presentation of severe respiratory disease in 2019. Although children exhibit mild disease, concerns were raised about serious infection in immunocompromised children. The current national guidance recommends that immunocompromised children between 12 and 18 years of age should be offered three primary doses of the Pfizer BioNTech vaccine, 8 weeks apart, followed by a booster dose within 3 months. This audit looked at the awareness and uptake of this regime in young persons on immunosuppression. This information was disseminated to families during clinical contacts and automatic replies sent out from the team mailbox.Description/MethodTo collect the data for the audit, we used an anonymous questionnaire to capture the following information:• Diagnosis• Immunomodulatory/Immunosuppressive treatment• Their awareness of the regime for COVID vaccine (number of doses and interval)• Number of vaccines taken• If not taken, why?The questionnaires were handed out to 31 patients attending Paediatric Rheumatology day-care and outpatient clinics over a two-week period for their response. There were no non-responders. Patients who were not on any immunosuppressant medication were excluded.The split of their diagnoses and medications are summarised in tables 1 and 2:Patients with JIA (55%) unsurprisingly dominated the cohort, followed by JSLE, JDM and scleroderma. Only 3/31 patients (10%) were on any form of systemic steroid therapy (all on oral Prednisolone less than 0.5 mg/kg). Majority of the patients (21/31 – 68%) were on Methotrexate, either on its own, or in combination with one of the biologic agents (one scleroderma patient was on MTX + MMF). 14/21 (45%) patients were on one of the biologic agents, of which only one patient was on Rituximab.P69 Table 1:Patients' diagnosesDiagnosisNumber of respondentsJuvenile Idiopathic Arthritis (JIA)17 (2 – uveitis) – 55%Juvenile Systemic Lupus Erythematosus (JSLE)5 – 16%Juvenile Dermatomyositis (JDM)3 – 10%Localised scleroderma / Systemic Sclerosis3 – 10%ANCA Associated Vasculitis (AAV)1 – 3 %Systemic Autoinflammatory Disease2 (both Mevalonate Kinase deficiency) – 6%P69 Table 2:Patients' medicationsMedicationsNumber of respondentsSystemic steroids (on top of other medicines)3 (10%)Methotrexate (MTX)11 (35%)Methotrexate + Adalimumab6 (19%)Mycophenolate Mofetil (MMF)4 (13%)MTX + MMF1 (3%)Adalimumab3 (10%)MTX + Infliximab3 (10%)Canakinumab 2 (6%)Cyclophosphamide1 (3%)Discussion/ResultsThe results showed that only 6/31 (19%) of patients/their carers knew the correct number (3 + 1) of COVID vaccines recommended in this cohort. 18/31 (58%) patients had received the vaccine, of which 4 patients refused further doses due to side effects they had experienced following the first dose. Of the 13 young people who did not take the vaccine, 9 patients (29%) were unsure whether they need the vaccine. They did not know the benefits of the vaccine and were afraid it either could have a negative effect on immunocompromised children or just were not aware of the guidelines. The other 4 (13%) participants did not want to take the vaccine due to their own personal beliefs.Although concerns were raised about serious COVID-19 infection in immunocompromised children, there is currently very little evidence to suggest that the infection rate and severity of COVID-19 infection in children treated with Methotrexate or biologic agents is higher or the treatment needs to be discontinued or the doses adjusted. There is some emerging evidence to suggest that adults on Rituximab and to a lesser extend Mycophenolate may have increased risk of developing severe outcomes from COVID-19, which has not been replicated in children. The recommendation for third primary dose is based on preliminary results from UK studies of real-world vaccine effectiveness (VE) in persons who are immunosuppressed, suggesting a modest reduction in VE against symptomatic COVID-19. There is also emerging evidence that COVID vaccination significantly reduces the risk of Paediatric Inflammatory Multisystem Syndrome (PIMS-TS) in 12 – 18 year olds.Key learning points/ConclusionDespite the notion that the team had disseminated information on the vaccine regime to patients, only one fifth of the patients/carers knew the exact regime for COVID vaccine recommended in this group of young people.Just under 60% of the patients took the vaccine, with the rest choosing not to have it due to a mixture of lack of information and personal choice.The action plan was drawn up to:1. enquire about and document vaccination status, and provide advice and information during every clinical contact;2. include COVID vaccine in education sessions by nursing team;3. include the information as default in all clinic letters;4. reaudit in six months.

P70 Improving safety and efficiency of biologic and DMARD therapy prescribing through development of a multi-disciplinary virtual clinic

P70 Improving safety and efficiency of biologic and DMARD therapy prescribing through development of a multi-disciplinary virtual clinic