Rheumatology Service Research Articles

Anti-MDA5 positivity: describing the frequency and spectrum of clinically evident MDA5 disease.

To evaluate experience in a tertiary rheumatology service with melanoma differentiation-association-protein-5 (MDA5) disease and testing, patients with positive autoantibody results were reviewed for the presence of clinical disease. Anti-MDA5 positivity was detected in 2% of myositis-specific antibody tests. Of these, 29% did not have features consistent with anti-MDA5 disease. However, when present, MDA5 disease is severe with a high mortality.

Health literacy challenges of young adults with rheumatic diseased in the transition to adult care

Abstract Background For young people living with a chronic illness (such as rheumatic diseases), transitioning from youth to adult care is a challenging process requiring adequate health literacy (HL). Insight into the specific HL-challenges of young people with rheumatic diseases could contribute to preventing loss to follow-up, and improving medication adherence, health outcomes, and social participation. Methods A mixed-methods study was conducted among young adults (16-25 years old) living with rheumatic disease in the Netherlands. Participants were recruited at two clinics and through social media of patient initiatives. Quantitative data were digitally self-reported using the Health Literacy Questionnaire (HLQ) and Medication Adherence Report Scale (MARS). Qualitative data were collected through semi-structured interviews. Hierarchical cluster analysis of HLQ-data was used to identify health literacy profiles, uncovering strengths and weaknesses. Interview transcripts were analysed using content analysis and used to explore health literacy needs and confirm the HLQ results. Results Sixty-two participants completed the questionnaire and ten participants were interviewed. Six HL-profiles were identified, representing diverse strengths and weaknesses. Having sufficient information, social support, and critical appraisal were challenging across profiles. Some participants (particularly in profile 3) reported difficulties in taking medication. The interviews confirmed the quantitative findings and unveiled HL needs across seven categories, particularly the need for in-depth information and support, with a focus on (social) aspects of having a chronic illness as a young person. Conclusions HL-challenges of young adults with rheumatic diseases are similar to adult populations, but age-specific needs exist. The results can inform development of HL-responsive rheumatology services, for example during consultations or at the transition clinic.

A meta-analysis and systematic review of the use of transition tools for patients transitioning from paediatric to adult rheumatology services

Abstract Objectives Transition from paediatric to adult care can be challenging, but transition tools are designed to increase successful rates of transfer. We aimed to conduct a meta-analysis and systematic review into the use of transition tools on transfer of care from paediatric to adult services for rheumatology patients. Methods An extensive literature search was conducted using Medline, PubMed and Embase. 12 papers were included in a systematic review and 8 papers in the meta-analysis looking at use of transition tools on successful follow up in adult clinics. Results The meta-analysis showed 86.6% (95% CI: 53.3–80.6%) of patients who used a transition tool attended an adult outpatient clinic within 1 year of their last paediatric appointment, compared with 67.7% (95% CI: 56.7–99.7%) of patients who successfully transferred without a transition tool. Conclusions The systematic review demonstrated several unique transition tools with local success but no dominant method. This paper demonstrated a general positive influence of transition tools on successful transfer, but more research is needed to strengthen the association.

National survey of hospital rheumatology service users to inform a statement set describing the minimum service expectations for publicly funded rheumatology secondary care in Aotearoa New Zealand.

The essential components of a rheumatology service for public hospital rheumatology services in Aotearoa New Zealand are not yet defined. We aimed to seek the views of users of public hospital rheumatology services on potential components of a rheumatology service. Online survey of adults in Aotearoa New Zealand who self-reported as having used district health board rheumatology services in the past 5 years. Participants indicated their level of agreement (7-point Likert scale) on whether service statements should be a component of public hospital rheumatology services and provided free-text comments. Analysis used descriptive statistics and inductive content analysis. Over 80% of participants (n=237) agreed or strongly agreed with 23 of the 26 statements about rheumatology care. The three statements that did not reach 80% agree or strongly agreed addressed infusion services for biologic disease modifying anti-rheumatic drugs, offering outpatient assessment for non-inflammatory musculoskeletal conditions and discharge back to primary care when an inflammatory disease is stable. The free-text comments were 1) expression of support of the statement, 2) reconfirming how or why particular services were valued or valuable, 3) caveats about statements, and 4) suggesting other services not mentioned in the statement. People with inflammatory rheumatic diseases who have used rheumatology services agreed with the majority of the statements of service components, with some caveats. A statement set describing the minimum service expectations for publicly funded rheumatology secondary care in Aotearoa New Zealand has been developed and endorsed by Arthritis New Zealand and the New Zealand Rheumatology Association.

Biopsychosocial conditions of patients in the rheumatology department of a university hospital.

The aim was to examine biopsychosocial conditions of patients hospitalized in the rheumatology department of a university hospital. Ninety-six patients (mean age: 53.14 ±16.83 years) receiving inpatient treatment at the rheumatology service of a university hospital were included. Chest circumference, manual muscle testing, general well-being (Visual Analogue Scale - VAS), the Fatigue Severity Scale, the Rivermead Mobility Index, the Beck Anxiety Inventory, and the Nottingham Health Profile were used for evaluation. The average number of days hospitalized was 15.57 ±15.11. Mean disease duration was 7.91 ±9.34 years. Respiratory rate per minute was 22.55 ±6.03. Chest circumference measurement at rest was 97.01 ±9.70 cm, inspiration was 99.71 ±9.67 cm, expiration was 94.10 ±13.91 cm. Quadriceps muscle strength (on a scale of 0-5) was 4.26 ±0.74 on the right and 4.16 ±0.76 on the left; biceps brachii muscle strength was 4.46 ±0.64 on the right and 4.39 ±0.78 on the left. The VAS score was 6.03 ±2.51; the Rivermead Mobility Index was 11.41 ±4.11; the Nottingham Health Profile total score was 39.18 ±22.44; the energy level sub-score was 52.89 ±37.06. History of previous hospitalization was found in 42 patients (43.8%). Five patients (5.2%) were at bed level, 4 patients (4.2%) were at sitting level, 7 patients (7.3%) were at standing level, and 80 patients (83.3%) were at walking level. Seventeen patients (17.7%) used assistive devices for mobilization. Sixty-one patients (63.5%) were fatigued, and 21 patients (21.9%) had moderate anxiety. Inspiratory capacity of patients hospitalized in rheumatology service is low. Their respiratory rate is higher than the normal value. Their mobility and energy levels are at average values while fatigue and anxiety levels need to be considered. In addition to pharmacological treatments, we recommend that patients hospitalized in rheumatology service be supported by appropriate exercises provided by physiotherapists.

Addressing disparities in rural and remote access for rheumatology practice through a transformative tele-healthcare delivery system: Experience of a large cohort of patients in eastern India.

Background We present the experience of telerheumatology consultation services carried out in an eastern state of India. Methods We did this prospective, observational study of patients with rheumatological disorders and followed through telemedicine between December 2015 and May 2019. Results During the study period, we provided teleconsultation to 3583 patients with the help of 11 201 telemedicine visits. Patients resided at a median distance of 248 (13 to 510) km from the telemedicine hub. The cumulative savings of the patients as a result of this service were ₹2.4 crore (24 million). The median travel time saved was 7 hours (30 minutes to 12 hours) per patient per visit and a median of ₹6700 was saved per visit per patient. Conclusion Sustained efforts over a long period can lead to the delivery of essential rheumatology services via telemedicine to an under-priviledged population, reduce the financial burden of the poor, and help women to access healthcare services in remote parts of low- and middle-income countries (LMICs).

Albuminuria in patients with Systemic Lupus Erythematous

<p>Renal involvement is one of the main causes of morbidity and mortality in patients with Systemic Lupus Erythematous. Lupus Nephropathy should be detected early. Albuminuria may be the only finding in the early stage of kidney disease. An observational, descriptive and retrospective study was carried out to determine the presence of Albuminuria (> 30 mg/24 h) in 60 patients with SLE who were admitted to the Rheumatology Service of the “10 de Octubre” Surgical Clinical Hospital, between October 2013 and September 2014. Albuminuria was observed to increase with increasingly pronounced drops in Glomerular Filtration (predicted according to the equation used in the MDRD Study). A significant statistical association was also obtained between albuminuria and disease evolution time: the longer the disease evolution time, the greater the albuminuria observed. Albuminuria is frequent in patients with SLE, its values being directly proportional to the time of evolution of the disease. This did not occur with the Glomerular Filtration, which remained relatively constant for any time of disease evolution.</p>

PEER CONNECT: a pragmatic feasibility randomised controlled trial of peer coaching for adults with long-term conditions

ObjectiveTo test the feasibility of a targeted peer coaching intervention on the health and well-being of people with long-term health conditions and low activation attending outpatient clinics at a UK...

Lupus pregnancy outcomes in women with previous adverse outcomes: a prospective cohort study.

The primary objective of this prospective cohort study was to assess the usefulness of a predefined multidisciplinarycare pathway-based management on pregnancy outcome(s) in women with SLE who already had at least one adverse obstetric outcome(s). Between March 2010 and March 2023, all consecutive, consenting women with SLE who already had at least one previous adverse obstetric outcome (preterm labour, pre-eclampsia, termination of pregnancy, miscarriage, intrauterine growth retardation (IUGR), preterm birth, low birth weight (LBW), intrauterine death (IUD) or stillbirth] were prospectively screened and counselled. The protocol comprised preconception and post-natal drug and disease status review, periodic ante-natal visits for the monitoring of pregnancy and drug and disease status review and post-natal drug and disease status review and contraception advice. Therapeutic changes were made as necessary at each visit. A total of 213 women were screened and 197 women (age, 28 ± 6.34years) were enrolled who had 226 pregnancies. Previous poor obstetric outcomes were miscarriage(s), 186; termination of pregnancy, 4; preterm labour, 51; IUGR, 36; IUD or stillbirth, 16; low birth weight (LBW), 44 and pre-eclampsia, 4. Seventy-seven (39%) women had secondary APS and 37 (19%) had a history of lupus nephritis. There were 194/226 (86%) live births [40 LBW (18%); caesarean section in 101 (45%)]. Thirty pregnancies culminated in miscarriages and 2 in IUDs (14%). Sixty-eight patients (30%) experienced lupus flare during pregnancy (36 mild, 20 moderate and 8 severe). Our experience underscores the usefulness of a predefined multidisciplinarycare pathway-based managementfor improving pregnancy outcomes in women with SLE who had previous adverse outcomes. Key Points • In women with SLE who had previous adverse obstetric outcome(s) a risk of poor outcome in subsequent pregnancy remains. • Good pregnancy outcomes in these women could be achieved bypredefined multidisciplinary care pathways focussed on addressing all relevant issues. • Improved access to rheumatology services and collaboration between rheumatologists and obstetricians is key to improving outcomes in SLE pregnancies.

A quantitative comparison between the essential medicines for rheumatic diseases in children and young people in Africa and the WHO model list

BackgroundThe World Health Organisation Essential Medicines List (WHO EML) guides National Essential Medicines Lists and Standard Treatment Guidelines for clearly identified disease priorities especially in low- and middle-income countries. This study compares the degree to which the basket of medicines recommended for rheumatic diseases in children and young people in National Essential Medicines Lists of countries in the WHO Africa region, corresponds to the 2021 WHO EML and WHO EML for children, as a proxy of availability.MethodsAn online search of the WHO medicines and health technology portal, the Health Ministry websites of the 54 African countries, PUBMED and Google Scholar, with search terms for ‘National Essential Medicines List’, AND/OR ‘standard treatment guidelines’ AND/OR ‘Lista Nacional de Medicamentos Essenciais’ AND/ OR ‘Liste Nationale de Medicaments Essentiels’ AND Africa AND/OR < Name of African country > was conducted. The number of medicines on the national lists were compared according to a predefined template of medicines; and the percentage similarity calculated. Descriptive statistics were derived using STATA.ResultsForty-seven countries in the WHO Africa region have developed a National Essential Medicines List. Eleven countries do not have any medicines listed for rheumatic diseases.The majority of countries had less than or equal to 50% similarity with the WHO EML for rheumatic disease in children and young people, median 3 medicines (IQR 1— 4). The most common medicines on the national lists from Africa were methotrexate, sulfasalazine and azathioprine, with etanercept available in 6 countries. Seven countries had only one medicine, acetylsalicylic acid listed in the section ‘Juvenile Joint diseases’.A multiple linear regression model for the predictors of the number of medicines on the national lists established that 20% of the variability was predicted by health expenditure per capita, socio-demographic index and the availability of rheumatology services (adult and/or paediatric) p = 0.006, with socio-demographic index (p = 0.035, 95% CI 0.64—16.16) and the availability of rheumatology services (p = 0.033, 95% CI 0.13 – 2.90) significant.ConclusionFour countries (8.5%) in Africa have updated their National Essential Medicines Lists to reflect adequate care for children and young people with rheumatic diseases. Moving forward, efforts should focus on aligning available medicines with the WHO EML, and strengthening healthcare policy for rheumatology and pharmaceutical services, for affordable access to care and medicines.

A national survey of rheumatology telephone advice line support in the United Kingdom: frontline perspectives.

Telephone advice lines are a key component of rheumatology services. A national survey of telephone advice line providers was undertaken to explore how this service is currently delivered and the impact on those delivering it to inform providers, policymakers and patients. We conducted an online survey between March and September 2023 collecting data on demographics, how advice lines function, governance and the impact on nurses' well-being. Data were analysed using descriptive statistics. A total of 123 health professionals completed the survey. The majority were rheumatology nurses [n = 118 (96%)], >45years of age [n = 112 (91%)], band ≥7 [n = 92 (76%)], with 77 (65%) reporting >10 years of experience within rheumatology. Most advice lines operated weekdays only [n = 93 (79%)], with most calls returned within 2 days [n = 81 (66%)], although some callers waited >7 days [n = 19 (15%)]. The number of calls received monthly ranged from 100 to >800, with 46 (37%) responders reporting >500 calls/month. The most common reasons for contacting advice lines were disease activity, pain and medication concerns. For most responders, governance arrangements were unclear [n = 72 (61%)]. Providing advice lines impacted on the well-being of nurses providing the service: 89 (72%) felt anxious 'sometimes to mostly' and 79 (64%) found it 'mostly-always' stressful. A total of 85 (69%) nurses had not received any training to manage advice lines. Although telephone advice lines are provided by experienced rheumatology nurses, high demand is impacting on well-being. Having designated training could equip nurses with additional skills to manage increased capacity and monitor their own well-being.

Deciding to Attend the Emergency Department: Experiences of Patients With Inflammatory Arthritis.

Patients may use emergency departments (EDs) to meet their health needs when ambulatory care systems are not sufficient. We aim to describe contributing factors to the decision made by persons with inflammatory arthritis (IA) to present to the ED, as well as their experiences of ED care and postdischarge follow-up. An embedded mixed-methods approach was taken to contextualize quantitative data with associated free-text responses from an online survey distributed to residents of Alberta with a known IA condition and an ED visit. Eighty-two persons (63% aged 16-55 years, 48% female, 50% urban residents) with rheumatoid arthritis (48%), psoriatic arthritis (12%), spondyloarthritis (6%), or gout (34%) completed the survey. Presenting concerns were arthritis flare (37%), chest pain (15%), injury (12%), and infection (11%). Of all visits, 29% proceeded directly to the ED, 35% attempted accessing ambulatory care first, and 32% arrived for a return visit. In presentations for arthritis flare, patients were aware of the rheumatology service being contacted by the ED provider for advice in just 9% of events. Challenges in healthcare system coordination and system pressures resulted in patients requiring ED attendance to assess their concern. The quality of communication and relationality developed between patients with IA and healthcare providers informed experiences of ED care. Modifying rheumatology ambulatory care models could better meet patient needs and ultimately reduce avoidable ED use by patients with IA.

The transition process for paediatric rheumatology clinic patients at a single tertiary paediatric rheumatology centre in Australia.

This study aimed to examine the transition process of paediatric rheumatology patients from the Monash Children's Hospital (MCH) in Melbourne in order to identify areas that could be improved. Retrospective review of clinical data from the rheumatology database of paediatric rheumatology patients eligible for transition between January 2015 and September 2020. One hundred and sixty-five patients were included; 57 patients were transitioned. Of patients transitioned to an adult service, 38 (88%) were on medication and 14 (33%) had active disease. All patients transitioned to the general practitioner (GP) had inactive disease off medication. Juvenile idiopathic arthritis (JIA) (non-systemic) was the most common diagnosis in patients transitioned. The mean age at which transition was first discussed was 18.0 years; the first referral was made at a mean of 18.3 years. The mean age at the first adult appointment was 18.5 years. Thirty-nine (91%) patients had a referral completed and 8 (19%) had a transfer letter. Thirteen (93%) patients transferred to the GP had a transfer letter. Transfer documents to an adult public rheumatology service rated 4.3 for quality, compared to 5.5 to the GP. Transfer of care was confirmed in 40 (93%) patients transitioned to an adult service; however, correspondence was available for only 3 (7%). Although the transition process at MCH was adequate, it could be improved through earlier discussion of the process and improved referrals and documentation. A readiness-to-transfer checklist and a young adult clinic have the potential to improve the process of transition to adult rheumatology care.

E049 Including psychosocial approaches in paediatric and adolescent rheumatology: a service evaluation of an online art therapy group intervention for children, young people, and families

Abstract Background/Aims Children and young people with long-term physical conditions may develop mental health problems that have an impact upon their daily lives and families. Rates of anxiety and depression in children with juvenile idiopathic arthritis are higher than in peers without this diagnosis. The impact of long-term conditions on children and young people’s mental health and the pressure it puts on family life has been observed and reported in paediatric rheumatology clinics in the UK. Art therapy has long been considered to be a developmentally appropriate way to support children and young people with long-term conditions and it is routinely provided in some NHS services. A service evaluation of manualised online art therapy groups was carried out at the Great North Children’s Hospital to seek further understanding about the accessibility, acceptability, and uptake of this service. Methods A service evaluation was registered and undertaken at the Great North Children’s Hospital, Newcastle Upon Tyne. Art therapy groups consisted of six online 90min sessions with additional resources provided to parents to encourage conversations at home prior to the young people attending the group. Groups were facilitated by a HCPC registered art psychotherapist and included completion of structured activities/worksheets and art making time. Young people who attended the rheumatology service art therapy groups were asked for feedback about their experiences and a audio-recorded focus group style discussion with the art therapy delivery team was conducted. In addition, children and parents were asked to comment on the acceptability of standardised assessment measures that could be utilised in future outcome studies of psychosocial interventions of this kind. Results Thirteen young people who had accessed the art therapy group were included in the service evaluation which was carried out by members of the therapy team and nursing staff. Young people attending the group reported experiencing personal benefits, including valuing opportunities to speak with other young people who had a long-term condition and engagement and sharing a group experience through art activities. Parents responded positively to having time to reflect using the home-based resources and some observed their children appearing calmer and more able to express themselves. Online and digital access difficulties did create barriers to consistent attendance for some group members. Measures of outcome that were considered acceptable for completion by young people and family members included a validated quality of life assessment. Parents and staff reported underestimating the severity of mental health symptoms (anxiety and depression) indicated in young people’s response to completion of a validated measure. Conclusion Online group art therapy was considered to be accessible and acceptable as routinely provided in a paediatric and adolescent rheumatology service. Future research could be undertaken to formally assess the effectiveness of these types of psychosocial interventions. Disclosure S.S. Hackett: None. S. Jandial: None. L. Craig: None. P. Watts: None.

P036 Missing vital steps: why does my rheumatology team never speak to me about exercise?

Abstract Background/Aims UK Rheumatology services are stretched. Rollout of Patient Initiated Follow Up and pressure on job plans/clinic templates mean people with inflammatory arthritis (IA) may spend less time with their rheumatology team. An important but insufficient aspect of care in people with IA is empowering them to acquire good understanding of their disease and building their ability to deal effectively with the practical, physical and psychological impacts of it. Ability to self-manage in IA represents an essential component of care beyond drug therapy, but barriers to implementation of education in self-management exist. Surveys show that rheumatology Healthcare Practitioners (HCPs) don’t know how best to support patients becoming more physically active. Research demonstrates that people with IA have multiple barriers to undertaking regular physical activity (PA) or exercise, including physical limitations, reduced mobility, fatigue, also lack of confidence and not knowing what to do, fear of embarrassment, injury or making symptoms worse, a lack of professional input, advice and resources, inaccessible facilities and financial costs. Methods To address these issues in those living with IA, the National Rheumatoid Arthritis Society (NRAS) collaborated with experts in PA and exercise to create a module on this topic to include in their e-Learning programme, SMILE-RA. The module included: • science behind the research in lay terms • role of physiotherapists (both specialist rheumatology physios and community-based physios) • barriers and facilitators to exercising • goal setting • types of exercise • stories from people with RA inspired by exercise NRAS wanted to provide free resources for people to use who may struggle with exercise due to loss of mobility/function who may lack confidence to exercise. In addition to the online learning, NRAS approached experts in different exercise and PA fields, some of whom had RA themselves, to provide supplemental 15-minute video sessions to run alongside the module. Results The Module launched end of June 2023 with five 15 minute ‘taster’ videos on different forms of exercise appropriately adapted for a broad spectrum of people with IA. These taster sessions can be done safely, seated or standing, and used as ad hoc routines or as regular daily workout, increasing the repetitions as strength and ability increases. Over 3,500 people are registered to SMILE-RA, and, amongst other beneficial results, a survey has shown that 84% of users would recommend SMILE to another person. An HCP, in recommending this resource to colleagues, stated that this exercise module “will revolutionise your consults on exercise in RA.” Conclusion The “PA and Exercise” module can be used to support busy rheumatology professionals by recommending this free resource to their patients and in educating themselves to gain confidence in how to advise patients in this crucial and often overlooked area. Disclosure A.M. Bosworth: None. W.J. Gregory: Honoraria; W.G. has received honoraria for speakers and advisory board roles from Abbive, Novartis, Pfizer and UCB.

E020 Osteoporosis service improvement audit

Abstract Background/Aims Osteoporosis referrals are sent to rheumatology departments for consideration of parenteral treatments in those who are unable to tolerate oral bisphosphonates or have failed treatment. The rheumatology services at Croydon University Hospital (CUH) are oversubscribed which results in long waiting times for appointments and increased workload on clinicians. The aim of this audit is to identify the scope of osteoporosis workload, the source of referrals, to improve distribution of the osteoporosis workload in CUH and redesign the pathway for osteoporosis referrals. A secondary aim is to identify patients that could be managed without referral enabling more consultation slots within the rheumatology department for patients that present with early inflammatory arthritis. Methods Data was collected retrospectively from all the patients that had been referred to the rheumatology department, either internally or externally and offered a new osteoporosis appointment from June to mid-September 2022 (104 patients in total). A data collection sheet was created from electronic patient records. The data included the patients’ hospital number, age, sex, height, weight, BMI, race, source of referral, reason for referral, fractures sustained, admissions for fracture, prior treatment with IV/ oral bisphosphonates, which oral bisphosphonate treatment and reasons for stopping, co-prescription of calcium/ vitamin D and the follow up plan. Results Among patients who were surveyed, 33 were internal referrals. Referring departments were as follows: 18 from fracture liaison service (FLS), 7 from care of the elderly (COTE), 3 from orthopaedics, 1 from rheumatology, 1 from nephrology, 1 from endocrinology, 1 from haematology and 1 from respiratory. In the GP cohort (71 patients), many were intolerant to oral bisphosphonates due to gastrointestinal upset. Reasons for referral were as follows: 36 for intolerance to oral medication, 14 for declining BMD, 11 for restarting medication after drug holding, 9 for complexity of cases (including young age/ male/ anorexia/ osteogenesis imperfecta), 8 unspecified, 7 had sustained a fracture on treatment, 6 received breast cancer treatment, 6 had renal impairment, 6 for a second opinion and 1 for considering a drug holiday. Conclusion This audit highlights the issues associated with osteoporosis workload and suggests improvements for managing the referrals both internally and externally. GP education is important for managing patients not tolerating oral bisphosphonates before accepting referrals. We have started recommending GP to try alternative oral bisphosphonates or effervescent alendronic acid prior to referral. Some internal workload can be managed by the referring team with advice being provided by the rheumatology team in order to reallocate rheumatology appointments for other conditions. The rheumatology department at Croydon University Hospital met with stakeholders from COTE and FLS and discussed the audit results. The COTE team agreed to initiate and continue IV zoledronate to reduce the osteoporosis burden on the rheumatology department. Disclosure S. Taheri: None. R. Suresh: None. J. Burton: None. S. Adil: None. T. Ahmed: None. N. Horwood: None. R. Sathananthan: None.

E016 An audit on patient initiated follow up in rheumatology in Manchester Royal Infirmary

Abstract Background/Aims PIFU is not a new concept in rheumatology. Instead of arranging regular routine appointments for patients with stable diseases, PIFU empowers patients to seek help when needed, enabling them to take control of their care and reduce pressure on rheumatology services. NHS England recommends PIFU for rheumatology patients with stable inflammatory arthritis. They should also have a good understanding of their disease management and be able to contact the service promptly. If patients on PIFU contact the service and require face-to face appointments, they should be seen within 2-4 weeks. Despite existing recommendations, there appears to be wide variation between clinicians and managers on the understanding of PIFU. The aim of this audit is to compare diagnoses of rheumatology patients for PIFU in a single rheumatology department, and the waiting time for review once patients placed on PIFU have made contact, to NHS England standards. Methods A list of rheumatology patients placed on PIFU between October 2022 and July 2023 at Manchester Royal Infirmary was obtained. Data were collected from electronic patient records. Results A total of 130 (1.5%) patients were listed on PIFU by 18 clinicians. The table outlines the demographics and detailed breakdown of diagnoses1. 1 (1%) was put on PIFU after patient declined biologic treatment for active inflammatory arthritis. 3 patients contacted the department whilst on PIFU, 2 of them required face-face review. Median time from start of PIFU to patient-initiated contact was 60 days (IQR 47.5-107.5). One with palindromic rheumatism was seen at 6 weeks and one with osteoarthritis had no appointment date yet 8 weeks after initial contact. Conclusion The audit confirmed that only 22 (17%) patients followed NHS England guidelines and 0% was seen as recommended once the patient contacted the department. Currently, 1.5% of patients in the rheumatology department are placed on PIFU, which is below 5% as per NHS England guidelines. This audit highlights the urgency to educate clinicians and managers on the cohort of patients listed on PIFU and to ensure all these patients are seen within the recommended time. Work is being done in the department to address these issues. Disclosure A. Cheung: None. G. Nowell: None. S. Ling: None. Y. Chiu: None. P. Ho: None.

P102 Should Fibromyalgia be Diagnosed in Primary or Secondary Care?

Abstract Background/Aims Both the Rheumatology Getting It Right First Time (GIRFT) report, published in February 2021, and the British Society for Rheumatology (BSR) referral guidelines from October 2021 recommend not referring patients with suspected Fibromyalgia to Rheumatology services. In contrast the Royal College of Physicians (RCP) guidelines on Fibromyalgia from 2022 recommend that for unequivocal cases, referral is not necessary, but that referral is appropriate if there is diagnostic uncertainty. We undertook an evaluation of our Rheumatology service to assess whether following either of these guidelines would be appropriate. Methods A prospective analysis of all patients referred to one general Rheumatologist over 18 months to assess the accuracy of suspected fibromyalgia diagnoses from primary care. The included cases were all patients referred with possible fibromyalgia on the referral letter, along with patients with an end diagnosis of fibromyalgia. Results Seventy-two patients were referred to one consultant with possible fibromyalgia on the referral letter. Of these, only 44 (61%) were confirmed as having fibromyalgia. Common other problems felt by the GP to be fibromyalgia included 2+ areas of localised soft tissue rheumatism (seven patients), localised chronic back pain (six patients) and biomechanical lower limb pains due to flat feet (three patients). Another 39 patients were diagnosed as fibromyalgia when not considered by primary care; nine of these patients were referred on the early arthritis pathway and two patients to the axial spondyloarthritis clinic. Overall this workload only constituted approximately 9% of new patients to the service, with patients with an end diagnosis of fibromyalgia making up approximately 7% of the overall new referrals. Conclusion The problems with diagnosing fibromyalgia in primary care are likely multifactorial - general practitioners (GP’s) are very busy and there is an increasing use of allied health professionals (AHP) in primary care, who do not always have the experience or training to diagnose fibromyalgia or other common musculoskeletal conditions. Some GP’s do not feel comfortable diagnosing fibromyalgia and some patients are just not happy with a primary care opinion. Overall, we do not feel that the diagnosis of fibromyalgia can be left solely in the hands of primary care; if the patients in this review had not been referred, then a significant number would have been incorrectly labelled as fibromyalgia, with all the problems that may bring. In view of this, the RCP guidelines would appear more appropriate than the BSR referral guidelines, but even then some of the patients in this review may still have ended up with an incorrect diagnosis, so overall Rheumatology departments should be very cautious about declining referrals for possible fibromyalgia and we continue to see these referrals in our department. Disclosure M.P. Sykes: None.

P007 Successful use of patient initiated follow-up in a tertiary paediatric rheumatology service

Abstract Background/Aims Patient initiated follow-up (PIFU) is a national strategy enabling patients or carers to initiate contact with a service rather than a traditional model of routine scheduled appointments. PIFU enables patient empowerment and elective recovery after the Covid-19 pandemic. NHSE identified Paediatrics as appropriate for PIFU, but specific measures are needed to ensure safeguarding of paediatric patients is maintained. Methods With NHSE &amp; I support and extrapolating guidance implementing PIFU in adult rheumatology services, we developed a clinical pathway that included safeguarding/governance structures within Paediatric Rheumatology at Alder Hey Children’s Hospital. Two strategies were developed - PIFU culminating with either a timed return (PEND) or discharge (DISCHARGE) model. A PIFU feasibility study in paediatric rheumatology initially targeted three index conditions (arthritis, mechanical pain and primary Raynaud’s) in March 2022. This was extended within a Plan-Do-Study-Act model of Quality Improvement. Results We placed 536 patients within PIFU pathways (PEND = 297, DISCHARGE = 239). The monthly usage of PIFU increased from &amp;lt;10 patients per month in March 2022 to &amp;gt; 40 patients per month in August 2023 with expansion of PIFU conditions. Within this time frame the number of patients put through the DISCHARGE model increased steadily to 60% of the monthly proportion as clinician confidence in PIFU increased. We demonstrate an 11% (total Rheumatology patients) PIFU rate over the study time frame, with a 2.7% (15/536) reactivation rate. Where calculable, timescale for review following activation was &amp;lt;48 hours. In our experience, patients/families are comfortable with PIFU and feel reassured by the safety-net provided. Decision for PIFU PEND/DISCHARGE is made in partnership with patients/families. As well as increased use within Rheumatology, PIFU use has extended to 80% of clinical teams across Alder Hey. The Trust-wide PIFU rate of 10% in September 2023 is double the original NHS England guidance target of 5%. Conclusion We advocate safety of PIFU in the correct population and its ability to empower patients. Table 1 shows the significant impact that correct use of PIFU can have on increasing capacity for seeing new patients, decreasing time to review and matching the number of patient reviews to referrals. Disclosure W. Calvert: None. J. Spinty: None. L.J. McCann: None. G. Cleary: None.

E018 Prophylactic co-trimoxazole prescribing practice in patients who received rituximab therapy: comparison across indications and specialties

Abstract Background/Aims Rituximab is a chimeric anti-CD20 monoclonal antibody targeting B-cells used as part of treatment algorithms for malignancy and autoimmune diseases. As is the case of other immunosuppressive agents, rituximab increases the risk of infections. Primary prophylaxis with co-trimoxazole may be considered in high-risk cohort of patients to prevent opportunistic infection, particuarly Pneumocystis jerovecii pneumonia (PJP). To investigate the prescribing practice for prophylactic co-trimoxazole in patients who received rituximab infusion in a large tertiary referral centre. To compare practices between rheumatology and nephrology department. To compare the incidence of hospitalisation for infection (particularly PJP) between those prescribed prophylactic co-trimoxazole and those who did not. Methods This was a single centre retrospective observational study over a 3 year period assessing prophylactic co-trimoxazole prescribing practice in 185 patients attending rheumatology or renal services in Cork University Hospital (CUH) and receiving rituximab. Co-trimoxazole prophylactic treatment was defined as prophylaxis dose of co-trimoxazole (either 480mg daily or 960mg three times per week) received during rituximab treatment and at least 6 months post completion of treatment. Results 185 patients’ medical charts were reviewed. Only 28 patients received prophylaxis with co-trimoxazole. The majority of patients (n = 24, 85%) who received prophylaxis with co-trimoxazole had an underlying diagnosis of small vessel vasculitis (SVV). Co-trimoxazole was more commonly prescribed by nephrologists (n = 17, 71% primarily for SVV) as compared to rheumatologist (n = 7, 29% primarily for SVV). 156 patients were not prescribed prophylactic co-trimoxazole. The primary indication for rituximab in these patients was inflammatory arthropathy (IA) (n = 72,46%), SVV (n = 26, 16%), systemic lupus erythematosus (n = 19, 12%), with the remainder accounted for by scleroderma, undifferentiated connective tissue disease, membranous nephropathy (MN), myositis, focal segmental glomerulosclerosis and amyloid renal disease. No patient was admitted over the course of the study period with PJP. 59 patients required hospital admissions due to other infections, most commonly patients with SVV. The most common infections were respiratory tract and urinary tract infections. Overall infections requiring hospitalization were more common in the group receiving prophylaxis, perhaps highlighting the vulnerable nature and greater prednisolone prescribing in the SVV cohort. No difference was seen between groups in the prevalence of UTIs. Conclusion In this cohort co-trimoxazole prophylaxis was more commonly prescribed for patient with small vessel vasculitis and differences in prescribing patterns were seen between nephrologists and rheumatologists. With greater awareness of the heightened risk of PJP in patents receiving rituximab consideration should be given to use of antibiotic prophylaxis for other indications. Disclosure S. Tio: None. J. Morrow: None. S. Cowley: None. M. Clarkson: None. G. Murphy: None.