bluuebunny/crossref_metadata_2025_split huggingface dataset:
P95 “Why do we have to lose this too?”: an exploration into the conversations around intimacy that individuals with Sjögren's syndrome have on an online forum
Authors: McCready Jemma L , McCarty Kristofor , Deary Vincent , Collins Tracy L , Hackett Katie L 
Published: April 2020

Abstract

Background
Sjögren’s syndrome (SS) is an autoimmune disease that predominantly affects women (by a ratio of 9:1), and age at onset is typically between 40-60 years. Symptoms of dryness of the vagina and vulva can cause painful sexual intercourse and can result in diminished levels of sexual arousal and desire. This can lead to a lack of understanding by their partner, which can place an immense strain on their relationship. Furthermore, intimacy issues can be a particularly sensitive subject and often go undiscussed, even between partners, which can leave them feeling isolated and without an adequate support network. Many patient groups turn to online support forums and use these sites to discuss sensitive issues under the cloak of anonymity. Analysing this source of data allows us to explore the conversations pertaining to intimacy issues that individuals with SS may not feel comfortable discussing in person.

Methods
The forum data was scraped using the automated Web Scraper tool, accessed from the developer tools within Google Chrome. The Computer-Assisted Qualitative Data Analysis (CAQDAS) software tool ATLAS.ti was used to facilitate the data analysis process. The process of analysis was conducted in accordance with both Braun and Clarke’s Thematic Analysis (TA) framework and Freise, Sorrato and Pires guidelines for applying the phases of TA within the ATLAS.ti software.

Results
A total of 3,557 posts were identified as being pertinent to the topic of intimacy. Conversations were centred around the lack of sexual activity with their partners, with users revealing they had been abstaining for years as a result of vaginal dryness, dyspareunia, fatigue and widespread pain. Numerous users discussed being unable to engage in intimate activities like handholding and hugging due to allodynia and issues with temperature regulation, as well as refraining from kissing as they perceived others kisses to be too wet and sloppy. One conversation theme was centred around increased cognitive effort and behaviour changes, with many users revealing that they plan sexual activity around symptoms, regularly implement self-management strategies before, during, and after sexual activity, and use smaller gestures to show emotion. There was also a body of conversation focused around the emotional impacts of sexual dysfunction with users unanimously discussing their experience with feelings of guilt, burden, fear of intimacy and pain, and saudade - a deep emotional state of longing for the past and their previous selves.

Conclusion
Individuals with SS experience alterations in their sexual activity and relationship dynamics, with symptoms of vaginal dryness, fatigue and pain being discussed as the most debilitating of symptoms.

Disclosures
J.L. McCready None. K. McCarty None. V. Deary None. T.L. Collins None. K.L. Hackett None.
P96 Evaluation of the 1st AStretch Digital Conference
Authors: Gregory William J , Martindale Jane , Martin Melanie , McDonald MT 
Published: April 2020

Abstract

Background
The physiotherapy AStretch committee promote excellence and education in axial spondyloarthritis. One channel for providing this is though the bi-annual conference. An average of 50 delegates attend these conferences. The planned 2018 conference was deferred and we took the opportunity to replace this with a digital version. A mid-November date was agreed for 'go live' of the digital conference; this was advertised on the AStretch website and on our social media channels in advance. Digital resources in the form of presentations and interviews were accessed via our website with some resources additionally held on our YouTube page. Conference access was open for a month from the 'go live' date. This papers aim is to evaluate engagement with our first digital AStretch Conference.

Methods
Qualitative and quantitative data was captured from YouTube, Twitter, Facebook and our AStretch emails from the 'go live' date until 1 month after. The quantitative data captured were the numbers of YouTube watches, twitter impressions, twitter engagements and the numbers of Facebook likes, comments and shares. In addition, qualitative data by means of free-text comments were recorded.

Results
We had several live questions on the night; answered across the team. There were 7,600 impressions on twitter with a 4.7% engagement rate, 137 link clicks, 41 retweets and 105 likes. The YouTube channel averaged 80 watches per video. Facebook had 54 likes, 6 comments and 18 shares. Examples of comments: “this has been excellent, well done to all involved”, “absolutely brilliant...a great CPD event”, “EULAR talk was great...interviews were good too”, “my NASS physios loved it”, and “what a great evening”.

Conclusion
We have shown that there is a high level of interest in a digital version of our AStretch conference. We have reached more people via this digital version of the conference than our average attendance at the in-person conference. We have observed far reaching engagement and sharing of knowledge in a cost-neutral and user-convenient method, which has the potential to ultimately improve patient care nationally and internationally.

Disclosures
W.J. Gregory: Honoraria; W.G. has received speaker fees from Novartis and received Conference attendance fees from Pfizer. J. Martindale: Honoraria; JM has received honoraria from Abbvie Ltd, Novartis, Pfizer and UCB. Grants/research support; JM has received a research grant from Pfizer. M. Martin: Honoraria; MM has received honoraria from Novartis and Abbvie. Grants/research support; MM has received a research grant from NASS. M. McDonald: None.
P114 Which antibody is more important for radiographic erosions in RA?
Authors: Minocha Amal , Kukran Sebi , Yee Philip , Nisar Muhammad K 
Published: April 2020

Abstract

Background
The presence of bony erosions in patients with RA is a marker of disease severity and once present they are largely irreversible. Previous studies have shown that those who are RF positive have more erosions than RF negative group. Likewise, ACPA is associated with increased bone loss and rapid erosive changes. The aim of our study was to determine which of these two antibodies is more strongly associated with erosive disease and whether being double +ve confers higher risk than single positive antibody status.

Methods
A retrospective study of 774 patients diagnosed with RA at large university teaching hospital during the period of January 1981 and December 2018. Clinical records were reviewed to determine antibody status, date of diagnosis, duration of symptoms, DAS-28, age, ethnicity and whether the 1987 Rheumatoid Arthritis criteria was met. The presence of radiographic erosions at diagnosis were determined from reports of plain film radiographs of hands and feet of all patients. Chi square model was utilised to ascertain if there was a significant relationship among the four groups. Mann Whitney two-tailed U test was employed to determine the significance of relationship between the double negative group and other arms for all variables including disease duration and delta change in DAS28. Significance level was predefined at 0.05.

Results
All patients fulfilled the 2010 ACR/EULAR criteria. 240 (31%) patients were male and 534 (69%) were female with an age range of 17 to 90 years for the cohort. The duration of symptoms ranged for the patient cohort from 0.5 to 250 months with a median of 6 months while the duration of disease ranged from 4 to 455 months with a median of 49 months. DAS 28 ranged from 1.19 to 8.4 with a median of 4.4. 367 (47%) were positive for both RF and ACPAs, 87 (11%) were positive for RF alone, 66 (9%) were positive for ACPA alone and 254 (33%) were antibody negative. There were a total of 127 patients with erosions at the time of diagnosis. Patients in the double positive group had a significantly higher (p = 0.003) erosion burden compared to the double negative group i.e. 21.5% in RF+/ACPA+ versus 11.0% in RF-/ACPA- group. The erosion burdens in RF+/ACPA- and RF-/ACPA+ groups were 13.7% and 12.1% respectively.

Conclusion
This is the first real world study to demonstrate the radiographic erosive burden in the RA cohort with respect to RF/ACPA status. Our results show that patients RF+/ACPA+ have nearly two-fold higher incidence of radiographic erosions than patients who are RF-/ACPA-. Patients with single antibody positivity have a trend towards higher erosive burden compared to the double antibody negative group however it’s the combination of two antibodies which is strongly associated with erosive disease.

Disclosures
A. Minocha None. S. Kukran None. P. Yee None. M.K. Nisar None.
P116 A systematic review of the safety of non-tumour necrosis factor inhibitor and targeted synthetic drugs in rheumatic disease in pregnancy
Authors: Nguyen Hanh , Ahmed Kawser , Flint Julia , Giles Ian 
Published: April 2020

Abstract

Background
Despite increasing evidence to support safe use of tumour necrosis factor inhibitor (TNFi) drugs in pregnancy, there remains a paucity of evidence regarding non-TNFi and targeted synthetic disease modifying anti-rheumatic drugs (tsDMARDs) in pregnancy. Therefore, we conducted a systematic review to summarise use of these drugs in pregnancy and breastfeeding.

Methods
Systematic search of databases including; EMBASE, Pubmed (MEDLINE), and Cochrane up to December 2018 using keywords including; commonly prescribed non-TNFi and tsDMARDs, pregnancy, conception/pre-conception, lactation/breastfeeding, childhood and vaccination/infection.

Results
From an initial screen of 700 papers, n = 92 full text papers were included in the final analysis. A summary of findings from known outcomes of pregnancy and breastfeeding exposures as well as long-term follow-up of infants where available are shown in Table 1. Overall, this data does not identify an increased risk of adverse pregnancy outcomes with these drugs in this population of patients.

Conclusion
These findings do not suggest an increased risk of non-TNFi and tsDMARDs in pregnancy. Given that the total number of exposures, however, remain limited these drugs should only be considered in pregnancy if the benefit of maintaining disease control in the mother justifies any potential risk to the fetus. This body of evidence will be useful when counselling women about the potential risks of using these types of drugs during pregnancy and breastfeeding period as well as following accidental exposure to drugs at conception.

Disclosures
H. Nguyen None. K. Ahmed None. J. Flint None. I. Giles None.
P145 A review of vitamin D testing in primary care: significant savings to be made
Authors: Riding Emily , MacPhie Elizabeth 
Published: April 2020

Abstract

Background
Vitamin D deficiency is common in the UK due to a lack of sunlight over the winter months. Risk factors include darker skin and reduced exposure to sunlight (e.g. housebound/institutionalised patients or those who cover skin for religious reasons). As part of the Choosing Wisely campaign, the British Society for Rheumatology recommend that vitamin D testing should be reserved for people at high risk of deficiency and avoided as part of routine investigation of widespread pain alone. They also recommend that repeat testing isn’t usually necessary in patients who are taking vitamin D supplements. The aim of this project was to review the testing of Vitamin D in a Primary Care setting.

Methods
An EMIS search was conducted for patients who had their vitamin D levels tested in September and October 2017. The following information was collected for each patient: indication for testing, vitamin D level, whether vitamin D had been tested previously or subsequently, treatment offered and the patient’s residence.

Results
96 patients had their vitamin D levels checked. Of these, 8 were excluded as they had been tested on the advice of secondary care. Of the remaining 88 patients, 6 (6%) were vitamin D deficient and 34 (38%) had insufficient vitamin D levels. The most common indication for testing was tiredness in 26 patients (30%) followed by generalised aching/lower limb pain 19 (22%). 8 (9%) patients were tested due to pain at specific sites including a single joint or abdominal pain, 5 (6%) due to neurological symptoms, 4 (5%) due to a diagnosis of CKD and 3 (3%) due to skin and hair problems. There was no clearly documented indication for testing levels in the remaining 3 (3%) patients. 35 (40%) patients had previously had their vitamin D levels tested and 19 (22%) patients had subsequent testing. Of the patients with abnormal vitamin D levels, 22 (25%) were prescribed treatment, 16 (18%) advised to buy over the counter and no advice was documented in 16 (18%) patients. None of the patients lived in residential or nursing homes.

Conclusion
This project identified a range of indications for vitamin D testing and a large number of patients who had repeated testing. This highlights a potential area for education in primary care surrounding the value in both initial and repeated testing of vitamin D levels. The findings show a need for an improvement in documentation as some patients had no clear linked reason for testing and no evidence that abnormal levels were actioned. However, there were limitations to determining whether BSR guidelines were followed as some factors that would lead to patients being at high risk of deficiency (such as skin colour) could not be collected from EMIS.

Disclosures
E. Riding None. E. MacPhie Other; EM is the secretary of the North West Rheumatology Club; meetings are supported by an unrestricted educational grant from UCB.
P148 Gastrointestinal symptoms and proton pump inhibitor use in patients with polymyalgia rheumatica: results from the PMR Cohort study
Authors: Feddah Hamzeh , Muller Sara , Hider Samantha , Hay Charles , Mallen Christian 
Published: April 2020

Abstract

Background
Polymyalgia Rheumatica (PMR) is a common disorder of older adults, characterised by pain and stiffness in the shoulders and hips. PMR is one of the commonest indications for long-term glucocorticoid use. Because of the well-recognised side effects of glucocorticoids including gastrointestinal disturbances and bleeding, guidelines recommend consideration of gastrointestinal prophylaxis. The aim of this study was to assess the proportion of PMR patients who report 1) gastrointestinal disturbances; and 2) appropriate prophylactic treatment, and to investigate other factors that may be associated with the development of gastrointestinal disturbances.

Methods
652 people diagnosed in primary care with incident PMR were recruited. Participants all responded to a baseline postal survey and were followed up postally at 1, 4, 8, 12, 18 and 24 months. At each time point, participants answered a range of questions relating sociodemographic, general health and their PMR. At baseline, respondents reported proton pump inhibitors (PPI) use and at 4, 12 and 24 months the presence and extent of any gastrointestinal symptoms (ulcer, wind, indigestion, heartburn; not bothered, bothered a little, bothered a lot). The association of gastrointestinal symptoms with age, gender and PPI use was quantified using proportional odds regression.

Results
Overall, 51% of people reported PPI use at baseline. Reporting of gastrointestinal symptoms was commoner at all time points in people prescribed a PPI at baseline (Table 1). There was no association between age and bothersomeness of gastrointestinal symptoms (odds ratio 0.98 (0.96, 1.00)), but more bothersome symptoms were more likely in females (2.44 (1.72, 3.45)). PPI use at baseline was significantly associated with a high level of bothersomeness compared to no/little bother (2.45 (13.39, 4.36)), but not with being bothered compared to not being bothered (1.23 (0.87, 1.74)).

Conclusion
Around half of patients with PMR report gastrointestinal symptoms. Symptoms are more prevalent in females and those prescribed a PPI. This suggests that GPs are prescribing PPIs in those they consider at higher risk of experiencing gastrointestinal symptoms. However, almost half of those without a PPI reported such symptoms within 4 months. Clinicians should be more aware of the potential for gastrointestinal symptoms in PMR.

Disclosures
H. Feddah None. S. Muller None. S. Hider None. C. Hay None. C. Mallen None.
P152 Skin score trajectory associates with survival and pulmonary outcome in diffuse cutaneous systemic sclerosis
Authors: Nihtyanova Svetlana I , Derrett-Smith Emma C , Fonseca Carmen , Ong Voon H , Denton Christopher P 
Published: April 2020

Abstract

Background
Skin thickness improves over time in most diffuse cutaneous systemic sclerosis (dcSSc) patients and the use of group level skin score (mRss) as an endpoint is clinical trials can be challenging. We explore the association between individual mRss trajectories and outcome in early dcSSc patients.

Methods
Subjects with at least one mRss assessment within the first 5 years from onset were included. Random effects models were fitted to evaluate changes in mRss over time and model-predicted individual patient intercepts and slopes were included in Cox regression to assess associations with outcome.

Results
Of the 467 patients, 22.7% were male and mean age of disease onset was 45.5 years. Most frequent autoantibodies were anti-Scl70 in 30.2% and anti-RNA polymerase (ARA) in 30.0% of subjects. Average mRss at 12 months from onset was 25 and this declined over time, slowing down with longer disease duration (3.4, 2.7, 1.9 and 1.2 units at years 2, 3, 4 and 5). Higher initial mRss associated with greater subsequent decline (correlation coefficient -0.3). Both higher baseline mRSS (intercept) and slower decline (higher slope) predicted increased risk of death with 8% increase in hazard for every unit higher baseline mRss and 4% increase for every unit higher slope (Table 1). Adjusting for autoantibodies did not change the estimates. ANA+ENA- subjects had the highest risk of death, followed by ATA + (HR 0.91, p = 0.677 v ANA+ENA-), while risk was lowest among ARA+ subjects (HR 0.47, p = 0.002 v ANA+ENA-). Risk of pulmonary complications was associated with rate of change in mRss but not with baseline absolute value. A unit slower yearly decline in mRss increased the hazard of pulmonary fibrosis (PF) by 3.5% and pulmonary hypertension (PH) by 7% (Table 1). The association between mRss and PF disappeared after adjusting for antibody specificities, while the association between skin and PH did not change. Autoantibodies did not show significant association with PH development within this dcSSc cohort.

Conclusion
Although at a group level there is an improvement in skin over the initial 5 years, for individual patients, poor outcome for skin predicts increased risk of pulmonary complications and higher mortality.

Disclosures
S.I. Nihtyanova None. E.C. Derrett-Smith None. C. Fonseca None. V.H. Ong None. C.P. Denton None.
P155 Co-existence of scleroderma hallmark autoantibodies associates with distinct clinical phenotype
Authors: Campochiaro Corrado , Clark Kristina E. N , Host Lauren , Sari Alper , Denton Christopher P , Ong Voon H 
Published: April 2020

Abstract

Background
Systemic sclerosis (SSc) is typically manifests with SSc-specific antibodies (SSc-Abs): anti-topoisomerase I (ATA), anti-centromere (ACA), anti-RNA polymerase III (ARA), anti-U3RNP (u3RNP), anti-U1RNP (U1RNP), anti-PmScl (PmScl), anti-Ku (Ku) and anti-Th/T0 (Th/T0), each being characterised by distinct clinical features and prognosis. The presence of &gt; 1 SSc-Abs is rare with minimum data about these patients’ clinical phenotype in SSc

Methods
The autoantibody profiles of 2,799 SSc patients from February 2001 to June 2017 were retrospectively reviewed. Patients with &gt;1 SSc-Abs were identified. Clinical features were collected and compared to historical cohorts of SSc patients with single SSc-Ab positivity. Patients were excluded if treated prior to their immunology test with rituximab, iv immunoglobulins or stem cell transplantation. Statistical analysis was performed using Fisher exact test.

Results
72 patients (2.6%) with &gt;1 SSc-Ab were identified. Full clinical data were available for 63 patients. 60 patients (2.1%) had double Ab positivity and 3 patients had triple Ab positivity (0.1%). 13 Ab combinations were present. U1RNP and ATA was the most frequent combination (35%), these patients were significantly younger(51.38 years) than both U1RNP (58.64 years,p=0.050) and ATA (62.03 years,p=0.002) patients and more commonly of diffuse subset (dcSSc)(p = 0.001 and p = 0.041 respectively). Compared to ATA patients overlap features were more frequent (43% vs 15%, p = 0.004) including inflammatory arthritis (p = 0.025) and myositis (p = 0.013) (Table 1). U1RNP and ACA had a significantly higher prevalence of pulmonary arterial hypertension compared to U1RNP (p = 0.039) and ACA (p = 0.022) patients, and compared to ACA patients they were younger (57.88 vs 68.75,p=0.015) with a higher frequency of myositis (p = 0.001). U1RNP and ARA patients were more frequently dcSSc subtype compared to U1RNP patients (75% vs 21%, p = 0.040). U1RNP and PmScl patients had a higher prevalence of myositis compared to U1RNP patients (p = 0.006). ATA and ACA patients behaved similarly to ATA patients with a significantly higher prevalence of lung fibrosis (p = 0.006) and myositis (p = 0.041) compared to ACA. ACA and PmScl (7%) had higher prevalence of myositis compared to ACA patients (p = 0.04).

Conclusion
Coexistence of hallmark autoantibodies is exceedingly rare in SSc patients. When combined, both SSc-Abs have the potential to synergistically interact and modify the clinical phenotype.

Disclosures
C. Campochiaro None. K.E.N. Clark None. L. Host None. A. Sari None. C.P. Denton None. V.H. Ong None.