bluuebunny/crossref_metadata_2025_split huggingface dataset:
P053 Patient engagement in long-term PROMs collection: 48-month observation in real-world clinical practice
Authors: Biliavska Iuliia , Lenguerrand Erik , Sparey Esme , Tobias Jon H , Hamann Philip D H 
Published: April 2023

Abstract

Background/Aims
Patient-reported outcome measures (PROMs) allow effective communication of disease experiences and encourage shared decision-making for people with inflammatory arthritis (IA). This analysis examines the long-term utilization of PROMs collection in a real-world clinical environment.

Methods
Clinical practice review at North Bristol NHS Trust rheumatology clinic (July 2018 - July 2022), focussing on PROMs collection (joint assessment (self-JA), HAQ, RAPID3) from patients with IA, using a smartphone-based diary (Living With) to assess and record disease activity. The app is GDPR and NHS Data Security and Protection Toolkit (ODS Code 8JP33) compliant. Ethical approval wasn’t required for this service review. Data were fully anonymized prior to analysis. Statistical analysis was completed in RStudio (V.1.4.1717). Kaplan-Maier analysis estimated app engagement. “Long-term” users were defined as those completing ≥1 PROM over 12 weeks before data cutoff. Participants recruited ≤16 weeks before data cutoff were excluded.

Results
Over 48 months, 1257 patients were invited and 967 (76.9%) downloaded the app.711 (56.6%) completed a PROM at least once. 79 (11.1%) were excluded due to diagnosis change out of IA group. Among 632 IA patients: 69.1% were female, mean age was 53.7±13.9 years. 63.7% had rheumatoid arthritis, 25.2% psoriatic arthritis; 7.4% undifferentiated IA, 2.1% enteropathic, 1.6% reactive arthritis, respectively. Recruitment increased over time with a noticeable rise in April 2020. The median number of completed RAPID3 was 9 [4; 30], self-JA - 9 [3; 26] and HAQ - 4 [1; 10]. 71.8% of recruited patients completed all PROMs; 15.8% - two PROMs and 12.3% - at least once. Median time in days from registration to first completed RAPID3 was 1 [0; 15], self-JA - 2 [0; 23] and for HAQ - 3 [0; 30]. Table 1 shows the proportion of “long-term” app users. The median duration of engagement was: RAPID3- 64.1 95%CI [36.9; 55.0], self-JA -57.9[52.7; 65.1], HAQ - 44.3 [36.9; 55.0] weeks.

Conclusion
Engagement in PROMs collection has markedly increased since 2020 but does decrease over time. Ongoing encouragement from health professionals to use and integrate PROMs into care pathways is essential and provides valuable information on the effectiveness and tolerability of health interventions.
Disclosure
I. Biliavska: None. E. Lenguerrand: None. E. Sparey: None. J.H. Tobias: None. P.D.H. Hamann: Consultancies; provided consultancy for Living With Ltd Software Company for the development of the smartphone application -Living With Rheumatoid Arthritis. Royalties; limited royalty agreement with Living With Ltd Software Company. Honoraria; from Gilead Pharmaceuticals for the production of training materials on remote monitoring for patients with arthritis.
P058 Pneumocystis Jirovecii Infection in autoimmune inflammatory rheumatic diseases in Oxford
Authors: Verdiyeva Ayna , Siosi Alexa Escudero , Andersson Monique , Woodrow Charles , Dubey Shirish 
Published: April 2023

Abstract

Background/Aims
Pneumocystis jirovecii pneumonia (PJP) is a rare but frequently fatal fungal infection, which can affect patients with rheumatic diseases treated with immunosuppressants or high doses of corticosteroids. The only guidelines for primary prophylaxis of this infection are for vasculitides treated with cyclophosphamide or rituximab. The aim of this abstract is to raise awareness of this preventable infection and to highlight the urgent need to create a tailored risk assessment algorithm to identify patients at increased risk of this infection.

Methods
We collected information on patients with autoimmune inflammatory rheumatic diseases (AIIRD) who had final working diagnosis of PJP from January 2021 to July 2022 in Oxford University Hospitals NHS Foundation Trust. Patients were identified through infection, respiratory and rheumatology teams. Electronic notes were reviewed to collate clinical data.

Results
We identified 11 patients who had definite or probable PJP infection of which 7 were female. Of these, 6 were being treated for large vessel vasculitis (LVV), 3 had rheumatoid arthritis (RA) and 2 patients had connective tissue disease (CTD). Median age was 78 years (range 46-93 years). 10 patients had lymphopenia with lymphocyte count &lt;1x10^9/L (the only patient without lymphopenia had chronic lymphocytic leukaemia (CLL)). Prednisolone was prescribed in combination with disease modifying anti-rheumatic drugs (DMARDs) in 6 patients and monotherapy (high dose) in 3 patients, whilst 2 patients were on DMARDs/biologic only. None of the patients who developed PJP had been given prophylaxis prior to the infection. All patients were treated with cotrimoxazole or atovaquone (in one case) for PJP. Unfortunately, 4 died from PJP infection. All these patients were taking 20-60mg prednisolone. Summary patient characteristics are shown in the table below.

Conclusion
PJP appears to be more common than is currently recognised. Prescribing PJP prophylaxis is not standard practice for patients with CTD and LVV. Consideration needs to be given to PJP prophylaxis for patients on high dose corticosteroids for a prolonged period, particularly in the presence of other risk factors. Better screening mechanisms are needed to identify those patients who will benefit most from PJP prophylaxis.
Disclosure
A. Verdiyeva: None. A. Escudero Siosi: None. M. Andersson: None. C. Woodrow: None. S. Dubey: None.
P070 Results of a consensus process to determine the elements of a complex digital intervention for distal upper limb musculoskeletal disorders
Authors: Brading Lucy , Kane Kathleen , McHugh Gretl , Dziedzic Krysia , Adams Jo , Chopra Swati , Swaithes Laura , Walker-Bone Karen , Macfarlane Gary , Conaghan Philip , Kingsbury Sarah 
Published: April 2023

Abstract

Background/Aims
Painful distal upper limb (DUL) musculoskeletal disorders (MSDs), including hand, wrist and elbow problems, are common but lack effective self-management tools. The Digital-My Arm Pain Programme (D-MAPP) aims to develop and test a digital self-management intervention for DUL-MSDs. This project aimed to determine the elements required for the D-MAPP intervention package.

Methods
A review of self-management interventions for DUL-MSDs identified 31 potential intervention elements. Subsequently, the elements were grouped into three overarching categories; Information and self-management advice, Information on treatment options, and Features of an exercise programme. Next, we employed Delphi methodology to develop consensus on the intervention elements from key stakeholders: Healthcare professionals who manage DUL-MSDs and people with a DUL-MSD (pwDUL-MSDs). A three-round modified online/postal Delphi questionnaire was used, with collation and presentation of results in subsequent rounds. Participants scored the importance of including each element in the D-MAPP intervention using a 9-point Likert scale; 1-3 limited importance, 4-6 important but not critical, 7-9 critical. Consensus was pre-defined as &gt; 70% of both healthcare professionals and pwDUL MSDs scoring an element in the same category. During each round, participants could suggest additional intervention elements for inclusion in the subsequent round.

Results
23 healthcare professionals from a range of disciplines (including occupational therapists, physiotherapists, rheumatologists and orthopaedic surgeons) and 19 pwDUL-MSD completed round one; 83% and 89%, respectively, completed all three rounds.
Round 1, consensus was achieved for 24 of the 31 elements, which were all deemed as critical to include in the D-MAPP intervention (Table 1). Two elements were suggested by participants and added to round 2. Two additional elements reached consensus as being critical in Round 2, and one further element reached consensus for inclusion in the third round. Six potential intervention elements did not reach a consensus.

Conclusion
Healthcare professionals and patients reached consensus on 27 elements, all of which were deemed as critical to include in the D-MAPP intervention. However, agreement among stakeholders on the importance level was not achieved for six potential elements. Following this work, the critically important elements will be developed through a co-design process to build the D-MAPP digital intervention.
L. Brading: None. K. Kane: None. G. McHugh: None. K. Dziedzic: None. J. Adams: None. S. Chopra: None. L. Swaithes: None. K. Walker-Bone: None. G. Macfarlane: None. P. Conaghan: None. S. Kingsbury: None.
P082 Research priorities regarding the use of bisphosphonates for osteoporosis: a UK priority setting exercise
Authors: Paskins Zoe , Moult Alice , Corp Nadia , Bastounis Anastasios , Davis Sarah , Narayanasamy Melanie Jay , Griffin Jill , Gittoes Neil , Leonardi-Bee Jo , Langley Tessa , Bishop Simon , Sahota Opinder 
Published: April 2023

Abstract

Background/Aims
Worldwide, many people who would benefit from osteoporosis treatment are not offered or receiving them, resulting in an osteoporosis care gap. Adherence with bisphosphonates is particularly low. This study aimed to identify stakeholder research priorities relating to bisphosphonate regimens for the treatment of osteoporosis.

Methods
A three-step approach based on the James Lind Alliance methodology for identification and prioritisation of research questions was used. Research uncertainties were gathered (Step 1) from recent published international clinical guidelines and a large programme of related research studies about bisphosphonate regimens: the ‘Bisphosphonate aLternAtive regimenS for the prevenTion of Osteoporotic Fragility Fractures’ (Blast Off) study, which consisted of six discrete individual research studies conducted between May 2019 and February 2022, relating to the experience, effectiveness and cost-effectiveness of different bisphosphonate regimens. Clinical and public stakeholders refined the list of uncertainties into research questions (step 2) and then prioritised the questions using a modified nominal group technique (step 3) in two, day-long online workshops.

Results
In total, 34 draft uncertainties were finalised into 33 research questions by stakeholders. Twenty nine stakeholders were involved in refining uncertainties and prioritisation, including 16 public contributors, 2 Allied Health Professionals, 3 GPs and 8 Consultants. The top 10 questions are shown in Table 1.

Conclusion
This study reports, for the first time, topics of importance to stakeholders in the research of bisphosphonate osteoporosis treatment regimens. The priorities address how to better implement guidelines to address the care gap, understanding patient factors influencing treatment selection and effectiveness, and how to optimise long-term care. These findings have implications for research into implementation to address the care gap and education of healthcare professionals in the treatment of osteoporosis.
Disclosure
Z. Paskins: None. A. Moult: None. N. Corp: None. A. Bastounis: None. S. Davis: Grants/research support; Grant from Roche Diagnostics to her employing insitution to fund research into the cost-effectiveness of using a biomarker to monitor response to treatment with antifracture medication. M. Narayanasamy: None. J. Griffin: None. N. Gittoes: None. J. Leonardi-Bee: None. T. Langley: None. S. Bishop: None. O. Sahota: None.
P086 Service evaluation of ultrasound use in patients with juvenile idiopathic arthritis in a UK tertiary paediatric rheumatology centre, as the first step towards developing an evidence-based guideline
Authors: Stead Lucy A , Malde Nishi , McCann Liza , Barnes Nik , Landes Caren , Gargh Kapil 
Published: April 2023

Abstract

Background/Aims
Some studies have shown that ultrasound can be more sensitive than clinical examination in detection of synovitis and improves diagnostic accuracy when clinical examination is in doubt. This study aimed to review if ultrasound results correlate with the clinical impression in patients with juvenile idiopathic arthritis (JIA) and determine if imaging helps to change management and assist in the optimisation of radiology resources, by improving our knowledge of when ultrasound is suitable.

Methods
We designed a retrospective study to review cases of JIA aged 1-18 years who have had an ultrasound requested from clinic between September 2021 - April 2022. Patients were excluded from study if; diagnosis was uncertain, new patients with JIA and patients with arthritis as part of a systemic inflammatory disorder. Data was collected from the radiology database and electronic patient record (MEDITECH).

Results
A total of 40 patients matched eligibility criteria with ultrasound performed on average 4 weeks after request. 13 (32.5%) male and 27 (67.5%) female with an average age of 11.7 years (3 -18 years). Of these patients 16 (40%) failed to demonstrate any active clinical signs of arthritis or tenosynovitis in clinic. The most common reasons for scan in this cohort included parental concern (43.75%) and difficulty of examination (12.5%). Other reasons included: patient reporting pain or morning stiffness in the absence of clinical signs during the consult. In these patients 13 (81.25%) were normal and 3 (18.75%) demonstrated chronic changes. Ultrasound in these patients did not lead to any change in treatment. 22 (55%) of patients demonstrated clinical signs of arthritis in clinic. 7 (31.2%) of these demonstrated active arthritis or tenosynovitis and subsequently had treatment changes in the form of a steroid injection (n = 5) or change in systemic medication (n = 5). Of those that had clinical signs but no active arthritis on ultrasound, 8 (36.4%) scans were found to be non-diagnostic / demonstrated chronic synovial thickening and 7 scans were normal (32%). 2 (5%) patients were seen in virtual clinic and not examined; both had a normal scan. Small joints of the ankles (26%) and hands (23%) are the most common joints scanned.

Conclusion
The use of ultrasound demonstrates benefit when clinical findings are present, and the scan allows clinicians to differentiate between active synovitis, tenosynovitis and chronic damage. In patients whose clinical examination does not show signs of inflammation, there is less evidence in this study for the use of ultrasound, and we should trust our clinical acumen.
Disclosure
L.A. Stead: None. N. Malde: None. L. McCann: None. N. Barnes: None. C. Landes: None. K. Gargh: None.
P095 Fibromyalgia correlates with neurodivergent traits in a self-selected community population
Authors: Ryan Laura , Beer Harriet , Thomson Ella , Philcox Edward , Kelly Clive 
Published: April 2023

Abstract

Background/Aims
Chronic musculoskeletal pain is now a common feature among younger women. Many such women exhibit a range of additional physical and psychological features and fulfil criteria for fibromyalgia. Hypermobility, irritable bowel syndrome and migraine are frequent comorbid conditions. These are all in part mediated by dysfunction of the autonomic nervous system and commonly include fatigue, poor sleep and brain fog. Anxiety, social withdrawal and a range of autistic traits are frequently described by those with chronic musculoskeletal pain, and autistic people are over-represented among patients attending pain clinics. This study was designed to explore the correlation between the degree of pain and autistic traits described within a self-selected community-based population.

Methods
The study used a nonexperimental, correlational design with data collected from a volunteer sample of 448 adults (aged 18-60) who completed online self-report questionnaires assessing each of autistic traits (RAADS score), fibromyalgia symptoms (ACR criteria) and hypermobility (Beighton’s test). Correlation analysis and linear regressions were used to test the relationships between each disorder. Data was analysed using parametric and non-parametric techniques to assess prevalence, strength and significance of relationships, causes of variance within populations and mediations.

Results
Our self-selected community population had a mean age of 24 years and was 77% female. The prevalence of significant autistic traits, fibromyalgia and hypermobility were all much greater than expected at 65%, 40% and 44% respectively. Those identifying as non-binary or trans had the highest rates. Fibromyalgia was strongly associated with autistic traits, with dysautonomia a better predictor than chronic pain. Regression analyses revealed hypermobility partially mediated the relationship between autistic traits and fibromyalgia.

Conclusion
This is the first community study to provide evidence for a direct association between fibromyalgia and neurodivergent traits. Although self-selected, the findings in our predominantly young population confirm that these conditions are common and that those with autistic traits are at significantly increased risk of developing fibromyalgia, especially if they are hypermobile. Those who self-identify as non-binary or trans appear at particular risk of developing features of fibromyalgia.
Disclosure
L. Ryan: None. H. Beer: None. E. Thomson: None. E. Philcox: None. C. Kelly: None.
P139 Rituximab in a large UK centre during the COVID-19 pandemic: the effects of employing a reduced dosing regimen on clinical response in Rheumatoid Arthritis patients
Authors: McLorinan Joanna , Slade Maria , Leong Chi-han , Baker Josie , Bailey Lynda , Nam Jacqueline , Bissell Lesley-Anne , Emery Paul , Dass Shouvik , Saleem Benazir 
Published: April 2023

Abstract

Background/Aims
When the COVID-19 pandemic began, steps were taken to minimise risk to those vulnerable to severe outcomes. For immunosuppressed patients with rheumatoid arthritis (RA), consideration was given to reducing risk whilst mindful of compromising control of their underlying condition. At Leeds Teaching Hospitals NHS Trust, patients receiving rituximab (RTX) were considered for a reduced dose regimen. A retrospective study, using real-world data, was undertaken to assess the impact of lower doses of RTX on response to treatment.

Methods
The clinical records of all patients with RA who had received RTX between March 2020 and March 2021 were reviewed. Demographics and previous RTX exposure were recorded. The dose of RTX given during the specified period was noted. Response to treatment was recorded pragmatically by physicians as good, partial or none, based on patient reported VAS for disease activity and swollen and tender joint counts, given the limitations placed on face-to-face patient review due to the pandemic. The time to subsequent RTX treatment and the need for steroid treatment for flares was also studied.

Results
The number of patients treated with RTX was 282, of whom 89 patients received full dose (1g x 2 infusions), 192 patients received half dose (500mg x 2 infusions). The mean age was 61 years. 77% were female. 9% were RTX-naive, 80% had previously had full dose. Follow-up data were available for 185/192 of the group receiving 1g and 88/89 of the group receiving 2g. Clinical outcomes were as follows for the two groups (1g RTX vs 2g RTX): no response 10.3% vs 9.1%; partial response:34.9% vs 20% %; good response: 54.8% vs 70.9%. The mean length of response was 7.5 months in the patients receiving 1g of RTX compared to 8.6 months in the group receiving 2g of RTX. Similar number of patients required steroid for a flare after receiving Ig of RTX (23.9%) compare to those receiving 2g of RTX (25.8%).

Conclusion
A majority of patients receiving RTX for RA at either standard or reduced dose reported clinical response. Those receiving lower dose RTX were more likely to report a partial response whilst those receiving full dose were more likely to report a good response. Duration of response and need for steroid therapy for flare of RA between treatments did not significantly differ between groups. Further analysis of factors that may influence clinical response to lower dose RTX is ongoing, which could guide tailored therapy regimens should the need arise again.
Disclosure
J. McLorinan: None. M. Slade: None. C. Leong: None. J. Baker: None. L. Bailey: None. J. Nam: None. L. Bissell: None. P. Emery: None. S. Dass: None. B. Saleem: None.
P155 Function is impaired during patient-reported idiopathic inflammatory myopathy flares - results from a longitudinal smartphone-based study
Authors: Howard Georgia , Krogh Niels S , Dixon William , Chinoy Hector , Oldroyd Alexander 
Published: April 2023

Abstract

Background/Aims
Idiopathic inflammatory myopathy (IIM) is a chronic autoimmune inflammatory disease characterised by myositis, thus impacting function and activities of daily living. Patients frequently refer to an exacerbation of IIM symptoms as a “flare”, however IIM flares have not been defined. High-frequency data collected via ubiquitous digital technologies, such as daily patient-reported outcome measurements, provide the opportunity to identify novel findings. This study aims to investigate associations between patient-reported IIM flares and function, thus characterising a priority area for patients.

Methods
The Myositis Physical Activity Device Study recruited a UK-based adult IIM cohort who completed weekly function and flare questions (i.e. every 7 days) via a specially designed smartphone-based app throughout a 13 week period in 2019/20. Weekly function questions, selected as priorities by a patient focus group from the Health Assessment Questionnaire, addressed carrying, exercise, socialising, reaching, and bending (4-point ordinal answers). A weekly flare question (binary “yes”/“no”) was also asked. The distribution of answers for function questions in participant-reported flare and non-flare weeks was calculated. Fisher’s exact test was used to determine whether there is a statistically significant difference between ‘flare’ and ‘non-flare’ weeks within each domain.

Results
Data on 21 participants (65% female) were collected across thirteen study weeks. In total, 1330 function questions and 266 flare questions were answered. 83 flare weeks and 183 non-flare weeks were reported. A lower proportion of answers across each function domain were answered as “without any difficulty” in flare weeks, compared to non-flare weeks (Table 1); the proportional difference was greatest for carrying and exercising. A higher proportion of answers across each function domain were answered as “with some difficulty” or “with much difficulty” in flare weeks, compared to non-flare weeks; the proportional difference was greatest for reaching and bending. Statistically significant difference (p-value &lt;0.05, calculated via Fisher’s exact test) of all domains was observed between flare and non-flare weeks.

Conclusion
Functional impairment is associated with patient-reported IIM flare. The impact of flares upon activities of daily living highlights the need for further characterisation of IIM flares and the potential of patient-reported flares as a “digital biomarker” via smartphone-based app reporting.
Disclosure
G. Howard: None. N.S. Krogh: None. W. Dixon: None. H. Chinoy: None. A. Oldroyd: None.