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Objectives GCA is systemic vasculitis manifesting as cranial, ocular or large vessel vasculitis. A prior qualitative study developed 40 candidate items to assess the impact of GCA on health-related quality of life (HRQoL). This study aimed to determine final scale structure and measurement properties of the GCA patient reported outcome (GCA-PRO) measure. Methods Cross-sectional study included UK patients with clinician-confirmed GCA. They completed 40 candidate items for the GCA-PRO at times 1 and 2 (3 days apart), EQ-5D-5L, ICECAP-A, CAT-PROM5 and self-report of disease activity. Rasch and exploratory factor analyses informed item reduction and established structural validity, reliability and unidimensionality of the final GCA-PRO. Evidence of validity was also established with hypothesis testing (GCA-PRO vs other PRO scores, and between participants with ‘active disease’ vs those ‘in remission’) and test–retest reliability. Results The study population consisted of 428 patients: mean (s.d.) age 74.2 (7.2), 285 (67%) female; 327 (76%) cranial GCA, 114 (26.6%) large vessel vasculitis and 142 (33.2%) ocular involvement. Rasch analysis eliminated 10 candidate GCA items and informed restructuring of response categories into four-point Likert scales. Factor analysis confirmed four domains: acute symptoms (eight items), activities of daily living (seven items), psychological (seven items) and participation (eight items). The overall scale had adequate Rasch model fit (χ2 = 25.219, degrees of freedom = 24, P = 0.394). Convergent validity with EQ5D-5L, ICECAP-A and Cat-PROM5 was confirmed through hypothesis testing. Internal consistency and test–retest reliability were excellent. Conclusion The final GCA-PRO is a 30-item, four-domain scale with robust evidence of validity and reliability in measuring HRQoL in people with GCA.

Background/Aims Recognition of jaw claudication is crucial to expedite diagnosis and treatment of giant cell arteritis (GCA). The ACR 1990 criteria defined claudication of the jaw, tongue or deglutition as “development or worsening of fatigue or discomfort in muscles of mastication, tongue, or swallowing muscles while eating”. We sought to describe the diverse ways in which patients may describe this key GCA symptom and its impact on health-related quality of life. Methods Secondary analysis of a qualitative dataset originally created for the development of a patient-reported outcome measure for GCA. Participants (n = 36) with GCA confirmed by biopsy/imaging were recruited using purposive sampling from two rheumatology clinics and one ophthalmology clinic in the UK (n = 25) and Australia (n = 11). Interviews transcripts from the original study were organised within QSR NVivo 12 software and analysed using template analysis. Themes were refined through discussion among researchers including a patient partner. Results 20 of 36 participants (56%) reported jaw symptoms. Of these 20, the median age was 76.5 years; 60% were female. Five main themes were identified in the data: physical sensations; impact on function; impact on diet; symptom response to steroids; attribution to other causes (see Table 1). Whilst a large proportion of patients described jaw pain, jaw cramp, jaw stiffness and lockjaw had also been described. Symptom resolution following commencement of steroids varied among participants. Jaw symptom was misjudged as due to dental cavity, ear infection and teeth grinding by healthcare professionals in some cases. Some patients did not seek immediate help from healthcare professionals regarding their jaw symptoms as they were thought to be related to arthritis, age or viral illnesses. Conclusion Patients with GCA described their jaw symptoms in various ways, not exclusive to chewing. When Horton originally described jaw claudication, he also observed that some patients reported ‘lockjaw’. For early recognition and prompt diagnosis of GCA, we suggest that textbooks and teaching should be updated to reflect this. Patient education on the potential significance of jaw symptoms is also crucial to avoid delay in seeking help. Disclosure J. Lim: None. E. Dures: None. L. Bailey: None. C. Almeida: None. C. Ruediger: None. C. Hill: None. J. Robson: None. S.L. Mackie: Consultancies; Roche/Chugai, Sanofi, AbbVie, AstraZeneca. Other; SLM has given talks on behalf of her institution for Pfizer, Vifor and UCB. In all cases fees were paid to her institution and no personal fees were received, SLM was supported by Roche to attend EULAR2019 and by Pfizer to attend ACR2021 virtually, SLM has been an investigator on clinical trials for Sanofi and GSK, As a research grant co-applicant, SLM has received research funding (partial salary support) from Vifor, paid to her institution.

Background/Aims Systemic lupus erythematosus, systemic vasculitis, inflammatory myositis, scleroderma and Sjogren’s syndrome are rare autoimmune rheumatic diseases (RAIRDs). A survey of people with RAIRDs found 61% were struggling, 45% had reduced/stopped work and 45% reported an impact on family life. A survey of NHS rheumatology departments found 80% do not offer access to self-management support to people with RAIRDs. Aims: To understand the patients’ experiences of their RAIRD and views on interventions to support self-management, including content and structure. Methods Online focus groups via Zoom using a topic guide developed with a multi-disciplinary team including patient partners with lived experience. Focus groups were advertised via patient charities’ social media platforms (Vasculitis UK, Scleroderma and Raynaud’s UK, Lupus UK, Myositis UK and the British Sjogren’s Syndrome Association). Sessions were audio-recorded, transcribed, organised using NVIVO, and analysed thematically. Results Twenty-six patients, 21 (80.76 %) female, median age 62 (range 34-82), participated in six focus groups. Diagnoses included systemic lupus erythematosus (4), inflammatory myositis (7), ANCA-associated vasculitis (5), mixed connective tissue disease (2), scleroderma (1), undifferentiated vasculitis (2), and primary or secondary Sjogren’s (16). Five patients (19%) were newly diagnosed ( Two related main themes capture the data:“I’m constantly doing medical admin along with surviving and fighting a disease.” A lack of joined-up healthcare (“I’ve got some great people but they’re not working as a team”), difficulty accessing specialists (“Everyone just passes you like the sort of parcel that no one wants to open”) and disease complexity (“she said you’re too complicated”) makes managing RAIRDs hard, resource-intensive work (“I’ve had to push so hard for all of it and I think that only happens with very rare conditions”).“Because you have very rare conditions it’s uniquely isolating.” The psychological impact of having complex autoimmune conditions can be exacerbated when they are poorly understood by family and friends (“I’ve encountered mental health problems having to manage family expectations of me”) and health professionals (“they’ve never seen a patient like me in their life”). Patients described strategies that could be beneficial at an individual level (“acceptance, mindfulness, meditation and to not beat myself up about things”) and the importance of addressing mental health (“you’ve got to build your self-esteem, so you don’t feel rubbish all the time”). Conclusion Patients with RAIRDs identified shared experiences to inform the development of a cross-condition self-management intervention. These include negotiating healthcare systems and managing the psychological impact of RAIRDs. Further work is needed with under-represented groups to identify whether their support needs are distinct. Disclosure E. Dures: None. C. Almeida: None. A. Hunt: None. P.C. Lanyon: None. N. Walsh: None. J.C. Robson: None.

Background/Aims Systemic glucocorticoids are key in the management of life- and organ-threatening rheumatic diseases, but have wide-ranging adverse effects of concern to patients and clinicians. We aimed to validate a Patient Reported Outcome (PRO) measure (the Steroid PRO) for assessing the impact of glucocorticoids on health-related quality of life (HRQoL) in patients receiving glucocorticoids for rheumatic disease. Methods This was a cross-sectional study of adults from the UK, USA, Australia and New Zealand, taking glucocorticoids for a rheumatic disease. An online survey was conducted at two time points: Time 1: (i) demographics - age, gender, country, ethnicity, educational level; (ii) clinical information - diagnosis, glucocorticoid dose; (iii) 40 candidate items for the Steroid-PRO, developed in a previous qualitative study; (iv) EQ5D-5L. Time 2 (optional, completed 3-5 days later): (i) the Steroid PRO candidate items; (ii) a condition change question. The survey was distributed via social media and patient organisations. After descriptive analysis, iterative testing with Rasch measurement model and exploratory factor analysis (EFA) informed item reduction and established structural validity, reliability and unidimensionality of the final Steroid-PRO. Item reduction was based on clinical importance, lack of fit to the Rasch model, and redundancy. Evidence of discriminative validity of the Steroid-PRO was established by comparing its scores for participants receiving lower dose glucocorticoid (up to 10 mg) versus higher dose (>10 mg). Intraclass correlation (ICC) between Time 1 and Time 2 was calculated for patients who reported ‘no change’ compared with 3-5 days ago. Results A total of 946 patients returned complete responses at Time 1 (Time 2: 447 responses). They were from UK, n = 743 (78.5%); USA, n = 139 (14.7%); Australia, n = 59 (6.2%). Their mean age was 57.6 (SD = 13.6); 833 (88%) were women. They were treated for inflammatory arthritis (n = 194), connective tissue disease and/or vasculitis (n = 398), and giant cell arteritis and/or polymyalgia rheumatica (n = 341). A total of 25 items were removed due to floor effects and lack of fit to the Rasch model. The remaining 15 items showed a satisfactory fit to the model. EFA suggested a scale structure with four domains: Participation (4 items), Appearance (3 items), Psychological (5 items), and Treatment concerns (3 items). This 4-domain structure was supported by the Rasch model, confirming construct validity; χ2=47.82 (DF = 36), p = 0.899; and reliability (Person Separation Index, PSI=0.757). Patients on a lower glucocorticoid dose had lower Steroid-PRO domain scores than those receiving higher dose (discriminant validity). ICC between Time 1 and Time 2 ranged from 0.892 to 0.942 (95%CI 0.868 to 0.953) suggesting excellent (test-retest) reliability. Conclusion The final Steroid-PRO is a 15-item, valid and reliable 4-domain scale measuring the impact of glucocorticoid therapy on HRQoL of people with rheumatic diseases. Disclosure S. Bridgewater: Grants/research support; S.B. has received funding for research from Vifor Pharma. M. Ndosi: Grants/research support; M.N. has received funding for research from Vifor Pharma. J. Dawson: None. P. Richards: None. C. Silverthorne: None. E. Dures: Grants/research support; E.D. has received funding for research from Vifor Pharma. S. Goodman: Consultancies; S.G. reports consultancy for UCB. Grants/research support; S.G. has received research support from Novartis. Other; S.G. has given talks for NYU, Case Western, ACR Rheumatology Courses. C. Hill: None. S.L. Mackie: Consultancies; S.L.M. has provided consultancy on behalf of her institution for Roche/Chugai, Sanofi, AbbVie, AstraZeneca. Grants/research support; S.L.M. has been an investigator on clinical trials for Sanofi and GSK, as a research grant co-applicant, S.L.M. has received research funding (partial salary support) from Vifor, paid to her institution. Other; S.L.M. has given talks on behalf of her institution for Pfizer, Vifor and UCB. In all cases fees were paid to her institution and no personal fees were received, S.L.M. was supported by Roche to attend EULAR2019 and by Pfizer to attend ACR2021 virtually. J.C. Robson: Consultancies; J.C.R. reports: Consultancy for Vifor Pharma. Grants/research support; Funding for research from Vifor Pharma. Other; Speaking fees from Vifor Pharma.

Objectives Glucocorticoids (GCs) (‘steroids’) are used to treat rheumatic diseases but adverse effects are common. We aimed to explore the impact of GC therapy on health-related quality of life (HRQoL), to inform the development of a treatment-specific patient-reported outcome measure (PROM) for use in clinical trials and practice. Methods Semi-structured qualitative interviews were conducted with patients from the UK, USA and Australia, treated for a rheumatic condition with GCs in the last 2 years. Purposive sampling was used to select participants with a range of demographic and disease features. An initial conceptual framework informed interview prompts and cues. Interviews elicited GC-related physical and psychological symptoms and salient aspects of HRQoL in relation to GC therapy. Interview data were analysed inductively to develop initial individual themes and domains. Candidate questionnaire items were developed and refined. Results Sixty semi-structured qualitative interviews were conducted (UK n = 34, USA n = 10, Australia n = 16). The mean age was 58 years; 39/60 were female; and 18 rheumatic diseases were represented. Some 126 individual themes were identified and organized into six domains: physical symptoms; psychological symptoms; psychological impact of steroids; impact of steroids on participation; impact of steroids on relationships; and benefits of steroids. Candidate questionnaire items were tested and refined by piloting with patient research partners, iterative rounds of cognitive interviews and linguistic translatability assessment, informing a draft questionnaire. Conclusion We describe an international qualitative study to develop candidate items for a treatment-specific PROM for patients with rheumatic diseases. A future survey will enable the validation of a final version of the PROM.

BackgroundPatients with inflammatory rheumatic diseases (IRDs) face challenges including pain, fatigue and disease flares. Evidence suggests their levels of anxiety and depression are higher compared to the general population. Rheumatology teams report psychologically distressed patients have additional support needs and require more clinical time. Little is currently known about models of support and their integration into care pathways.AimTo understand rheumatology health professionals' perspectives on patients' psychological distress and ways to meet support needs.MethodsThe study used a qualitative design, with data collected in telephone semi-structured interviews. Inductive thematic analysis was used to analyse the data.ResultsFifteen interviews were conducted. Two main themes with sub-themes represent the data: Theme 1: ‘No one shoe fits all’—the many manifestations of distress in patients (sub-themes: recognising distress, dealing with distress, dealing with life events alongside an IRD) and Theme 2: ‘If rheumatology could be interwoven with psychological principles’—the need to attend to the psychological impact of IRDs, alongside the physical impact (sub-themes: priority given to physical health, working together to help patients in distress, how should patient distress be measured?, the need for extra time and resources).ConclusionDistress can be obvious or hidden, cause issues for patients and health professionals and lead to poor engagement with care provision. Health professionals described the powerful link between physical and mental distress. This study suggests psychological support provision should be embedded within the rheumatology team and that patients' emotional wellbeing should be given equal priority to their physical wellbeing.

Background Chronic pain is a disabling condition. Many people with chronic pain seek informal support for everyday activities of daily living (ADL). However, there remains uncertainty on the type of people with chronic pain who access this support, what types of support they need and who provides such support. The purpose of this analysis was to answer these uncertainties. Methods Data from the Health Survey for England (HSE) and English Longitudinal Study of Ageing (ELSA) were accessed. People who reported chronic pain (moderate or above for minimum of 12 months) were identified. From these cohorts, we determined if individuals self-reported receiving informal care. Data on caregiver profiles and caregiving activities were reported through descriptive statistics. Logistic regression analyses were performed to compare health status outcomes between people with pain who received and who did not receive informal care. Results 2178 people with chronic pain from the ELSA cohort and 571 from the HSE cohort were analysed. People who received care were frequently female, older aged with several medical morbidities including musculoskeletal diseases such as arthritis. People with chronic pain received informal care for several diverse tasks. Most frequently these related to instrumental activities of daily living (IADL) such as shopping and housework. They were most frequently provided by partners or their children. Although they reported greater disability and symptoms ( p < 0.001), people who received care did not report differences in health status, loneliness or wellbeing ( p = 0.27; p = 0.46). Conclusions Whilst it may be possible to characterise people living in chronic pain who receive informal care, there is some uncertainty on the impact of informal caregiving on their health and wellbeing. Consideration should now be made on how best to support both care recipients and informal caregivers, to ensure their health and quality of life is promoted whilst living with chronic pain.

Objectives Patient activation covers the skills, abilities and behaviour that impact how able and willing someone is to take an active role in self-managing their health. This study explored clinical and psychosocial factors associated with patient activation in rheumatology patients. Methods This was a cross-sectional study using postal survey methods. Participants with inflammatory rheumatic conditions were from six rheumatology centres in England. Patient activation was captured using the Patient Activation Measure (PAM). Twenty-nine explanatory factors were tested for potential association with patient activation in univariable and multivariable analyses. In preliminary multivariable analyses, factors found to have an association with patient activation at a P Results The sample comprised 251 participants (74% female) with a mean age of 59.31 years (s.d. 12.69), disease duration of 14.48 years (s.d. 12.52) and a PAM score of 58.3 (s.d. 11.46). Of the 29 candidate factors, 25 were entered into a preliminary multivariable analysis. In the final multivariable analysis, four factors (self-efficacy, the illness belief that treatment will control participants’ condition and two dimensions of health literacy) were significantly associated with patient activation. This final model accounted for 40.4% of the variance in PAM scores [F(4, 246) = 41.66, P Conclusions Patient activation is important in managing rheumatic conditions. Our data confirm that self-efficacy and health literacy are particular targets for patient activation interventions.

Fatigue is a complex phenomenon and an important health concern for many people with chronic inflammatory rheumatic diseases, such as rheumatoid arthritis, psoriatic arthritis, primary Sjogren syndrome and systemic lupus erythematosus. Although some clinical trials have shown the benefits of cognitive behavioural therapy in fatigue management, the effect of this approach is relatively modest, and no curative treatment has been identified. The pathogenesis of fatigue remains unclear. Despite many challenges and limitations, a growing body of research points to roles for the immune system, the central and autonomic nervous systems and the neuroendocrine system in the induction and maintenance of fatigue in chronic diseases. New insights indicate that sleep, genetic susceptibility, metabolic disturbances and other biological and physiological mechanisms contribute to fatigue. Furthermore, understanding of the relationships between psychosocial factors and fatigue is increasing. However, the interrelationships between these diverse mechanisms and fatigue remain poorly defined. In this Review, we outline various biological, physiological and psychosocial determinants of fatigue in inflammatory rheumatic diseases, and propose mechanistic and conceptual models of fatigue to summarize current understanding, stimulate debate and develop further research ideas.

Background: Chronic fatigue is a poorly managed problem in people with inflammatory rheumatic diseases. Cognitive behavioural approaches (CBA) and personalised exercise programmes (PEP) can be effective, but they are not often implemented because their effectivenesses across the different inflammatory rheumatic diseases are unknown and regular face-to-face sessions are often undesirable, especially during a pandemic. We hypothesised that remotely delivered CBA and PEP would effectively alleviate fatigue severity and life impact across inflammatory rheumatic diseases. Methods: LIFT is a multicentre, randomised, controlled, open-label, parallel-group trial to assess usual care alongside telephone-delivered CBA or PEP against usual care alone in UK hospitals. Patients with any stable inflammatory rheumatic disease were eligible if they reported clinically significant, persistent fatigue. Treatment allocation was assigned by a web-based randomisation system. CBA and PEP sessions were delivered over 6 months by trained health professionals in rheumatology. Coprimary outcomes were fatigue severity (Chalder Fatigue Scale) and impact (Fatigue Severity Scale) at 56 weeks. The primary analysis was by full analysis set. This study was registered at ClinicalTrials.gov (NCT03248518). Findings: From Sept 4, 2017, to Sept 30, 2019, we randomly assigned and treated 367 participants to PEP (n=124; one participant withdrew after being randomly assinged), CBA (n=121), or usual care alone (n=122), of whom 274 (75%) were women and 92 (25%) were men with an overall mean age of 57·5 (SD 12·7) years. Analyses for Chalder Fatigue Scale included 101 participants in the PEP group, 107 in the CBA group, and 107 in the usual care group and for Fatigue Severity Scale included 101 in PEP, 106 in CBA, and 107 in usual care groups. PEP and CBA significantly improved fatigue severity (Chalder Fatigue Scale; PEP: adjusted mean difference −3·03 [97·5% CI −5·05 to −1·02], p=0·0007; CBA: −2·36 [–4·28 to −0·44], p=0·0058) and fatigue impact (Fatigue Severity Scale; PEP: −0·64 [–0·95 to −0·33], p

Background Non-adherence to treatment could preclude reaching an optimal outcome. Thirty to 80% of patients with rheumatic and musculoskeletal diseases (RMDs) do not adhere to the agreed treatment. Objectives The objective was to establish points to consider (PtCs) for the prevention, screening, assessment and management of non-adherence to (non-)pharmacological treatments in people with RMDs. Methods An EULAR task force (TF) was established, and the EULAR standardised operating procedures for the development of PtCs were followed. The TF included healthcare providers (HCPs), comprising rheumatologists, nurses, pharmacists, psychologists, physiotherapists, occupational therapists and patient-representatives from 12 European countries. A review of systematic reviews was conducted in advance to support the TF in formulating the PtCs. The level of agreement among the TF was established by anonymous online voting. Results Four overarching principles and nine PtCs were formulated. The PtCs reflect the phases of action on non-adherence. HCPs should assess and discuss adherence with patients on a regular basis and support patients to treatment adherence. As adherence is an agreed behaviour, the treatment has to be tailored to the patients’ needs. The level of agreement ranged from 9.5 to 9.9 out of 10. Conclusions These PtCs can help HCPs to support people with RMDs to be more adherent to the agreed treatment plan. The basic scheme being prevent non-adherence by bonding with the patient and building trust, overcoming structural barriers, assessing in a blame-free environment and tailoring the solution to the problem.

Objectives GCA is a large vessel vasculitis (LVV) presenting with headache, jaw claudication, musculoskeletal and visual involvement. Current treatment is glucocorticoids and anti-IL-6 tocilizumab in refractory disease. The objective of this study was to explore the impact of GCA and its treatment on people’s health-related quality of life (HRQoL), to inform the development of a disease-specific patient-reported outcome measure (PROM) for use in clinical trials and practice. Methods Participants from the UK and Australia, with biopsy- or imaging-confirmed GCA, were interviewed to identify salient aspects of HRQoL in relation to GCA and its treatment. Purposive sampling included a range of demographic and disease features (cranial, LVV-GCA and visual involvement). Inductive analysis identified individual themes of importance, then domains. Candidate questionnaire items were developed from the individual themes, refined by piloting, cognitive interviews and a linguistic translatability assessment. Results Thirty-six interviews were conducted to saturation with participants with GCA from the UK (25) and Australia (11). Mean age was 74 years, 23 (63.9%) were female, 13 (36.1%) had visual loss and 5 (13.9%) had LVV-GCA. Thirty-nine individual themes within five domains were identified: physical symptoms; activity of daily living and function; participation; psychological impact; and impact on sense of self and perception of health. Sixty-nine candidate items were developed from individual themes; piloting and refinement resulted in a 40-item draft questionnaire. Conclusion This international qualitative study underpins the development of candidate items for a disease-specific PROM for GCA. The draft questionnaire is now ready for psychometric testing.

Background/Aims Giant cell arteritis (GCA) presents in people over the age of 50 with cranial, ocular, and large vessel vasculitis. This study aims to validate a disease-specific patient-reported outcome measure (PROM) for patients with GCA, to capture the impact of GCA and its treatment on health-related quality of life. Methods This cross-sectional study included UK patients with clinician-confirmed GCA; diagnosed within the last three years or flaring within the last year. Patients completed the 40 candidate PROM items, the EQ5D-5L, CAT-PROM5 and self-report of disease activity. Rasch and factor analysis were used to determine internal validity and factor structure. Item reductions were based on clinical importance, Rasch model fit, and redundancy. Tests of validity included comparison of the GCA-PROM (i) in participants with ‘active disease’ versus patients ‘in remission’ (known groups validity) and (ii) with EQ5D-5L and CAT-PROM5 scores (convergent validity). Results The survey included 428 patients, mean age (SD) of 74.2 (7.2), 285 (67%) female. 327 (76%) cranial GCA, 114 (26.6%) large vessel vasculitis and 142 (33.2%) ocular involvement. Positive diagnostic tests included 167 (39%) temporal artery biopsy, 177 (41.4%) temporal artery ultrasound, and 51 (11.9%) Positron Emission Tomography and Computed Tomography (PET-CT). Active disease was reported in 197 (46%). After the initial analysis (40 items), ten items were deleted, and two response categories collapsed to ensure overall fit to the Rasch model. This resulted in a final PROM comprising a 30-item scale with a 4-response category structure. Factor analysis confirmed four factors (domains): Acute symptoms (8 items), Activities of daily living (7 items), Psychological (7 items) and Participation (8 items), all of which individually fitted the Rasch model (X2 = 25.219, DF = 24, p = 0.394 including reliability [Person Separation Index, PSI=0.828]), (construct validity). Each domain correlated, at least moderately, with EQ5D-5L and CAT-PROM5 scores (Spearman’s Correlation Coefficients 0.44 to 0.78) (convergent validity). The new GCA-PRO discriminated between patients with active disease and remission (known groups validity) (Table 1). Conclusion The 30-item GCA-PROM demonstrates internal and external validity in measuring health-related quality of life in people with GCA. Disclosure M. Ndosi: None. C. Almeida: None. J. Dawson: None. E. Dures: None. R. Greenwood: None. C. Guly: None. S. Mackie: Honoraria; Sept 2021: Roche/Chugai payment to my institution for delivering a talk on giant cell arteritis at an educational day. Grants/research support; MRC Confidence in Concept scheme, 2021 Grant to develop early diagnosis methods for giant cell arteritis, 2018: MRC Proximity to Discovery: Protein biomarkers for polymyalgia rheumatica and giant cell arteritis (PI: Morgan, University of Leeds), 2019: Roche: giant cell arteritis tocilizumab registry (PI: Morgan, University of Leeds). Other; Site Sub-Investigator on clinical trial in giant cell arteritis for Roche, Site Principal Investigator on clinical trial in giant cell arteritis for GSK, Site Principal Investigator and UK Chief Investigator on clinical trials (giant cell arteritis and polymyalgia rheumatica) for Sanofi. A. Bromhead: None. S. Stern: None. J.C. Robson: None.

Background/Aims Glucocorticoids (GCs) are widely used to treat inflammatory rheumatic diseases. GCs carry a range of adverse effects of concern to patients and clinicians. The objective of this study was to explore the impact of GC therapy on health-related quality of life (HRQoL) during treatment for rheumatic diseases, as a basis for development of a patient-reported outcome measure (PROM) to be used in clinical trials and practice. Methods Patients from the UK, USA and Australia who were treated with GCs in the last two years for a rheumatic condition were invited to take part in semi-structured qualitative interviews. A steering committee of patient research partners, clinicians and methodologists devised an initial conceptual framework, which informed interview prompts and cues. Interviews identified physical and psychological symptoms and salient aspects of HRQoL in relation to treatment with GCs. Purposive sampling was used to include a range of demographic and disease features. The interview data were organised using NVivo, and inductive analysis identified initial themes and domains. Candidate questionnaire items were developed and refined using cognitive interviewing, linguistic assessment, and input from patient research partners. Results Sixty semi-structured qualitative interviews were conducted (UK n = 34, USA n = 10, Australia n = 16). Mean participant age was 58 years; 39 (66.1%) were female. Detailed demographic and GC use information is provided in Table 1. The following initial domains were developed to identify key themes relating to treatment using GCs and their impact on HRQoL: benefits of steroids; physical symptoms; psychological symptoms; psychological impact of steroids; impact of steroids on participation and on relationships. Forty-one candidate questionnaire items were developed from the individual themes. These were tested and refined by piloting with patient research partners, iterative rounds of cognitive interviews with patients with a range of rheumatic conditions from the UK, USA and Australia, and a linguistic translatability assessment, to define a draft questionnaire. Conclusion This international qualitative study underpins the development of candidate items for a treatment-specific PROM for patients with rheumatic diseases. The draft questionnaire is now ready for testing in an online large-scale survey to determine the final scale structure, possible item reduction, and measurement properties. Disclosure S. Bridgewater: None. M.A. Shepherd: None. J. Dawson: None. P. Richards: None. C. Silverthorne: None. M. Ndosi: None. C. Almeida: None. R.J. Black: None. J.T.L. Cheah: None. E. Dures: None. N. Ghosh: None. E.A. Hoon: None. S. Lyne: None. I. Navarro-Millan: None. D. Pearce-Fisher: None. C. Ruediger: None. J. Tieu: None. K. Yip: None. S. Mackie: None. S. Goodman: None. C. Hill: None. J.C. Robson: None.

Background/Aims Giant cell arteritis (GCA) presents in people over 50, with headaches, visual involvement and large vessel vasculitis. A 30-item GCA-specific patient reported outcome measure (GCA PRO) was developed and tested in a clinical setting to pilot its feasibility and acceptability to patients and clinicians as a communication tool. Methods Patients seen in rheumatology or ophthalmology departments in Bristol and Leeds completed the GCA PRO prior to their consultation. Items referred to patients’ health-related quality of life over the past 7 days. Clinicians were given a copy of patients’ responses and a summary sheet highlighting overall scores which they referred to during the consultation. After the appointment, patients and clinicians completed short answer questionnaire (SAQ) plus free-text feedback forms reporting on the experience of use of the GCA PRO within the consultation. Results The GCA PRO was piloted during 16 clinic appointments. 16 patients, mean age (SD) of 74.7 (7.0), 11 (68.8%) female, 7 (43.8%) active disease and 5 (31.3%) with ocular involvement took part. Seven clinicians participated - 5 rheumatologists and 2 ophthalmologists. 87% percent of patients agreed that the GCA PRO had helped them to explain their condition; clinicians agreed that the GCA PRO had helped them to understand the patient’s condition 88% of the time (Table 1). Clinicians noted that “it was easier for the patient to convey his anxiety and feelings towards the disease and treatment” and that the GCA PRO “indirectly helped via prompting discussion of patient’s anxieties and worries”. However, they were more equivocal on its impact on decision making: “management plan was informed by symptoms, bloods and stage of illness”. Patients commented that “it helped us to plan how to manage my GCA based on my answers”, and that “the questions seemed relevant and it was helpful to me to be able to think about them before the appointment”. Conclusion The GCA-PRO was found to be an acceptable tool for use in clinic by patients and clinicians, especially in terms of explaining and understanding the patient’s condition. Disclosure C. Almeida: None. C. Guly: None. S. Mackie: Honoraria; Sept 2021: Roche/Chugai payment to my institution for delivering a talk on giant cell arteritis at an educational day. Grants/research support; MRC Confidence in Concept scheme, 2021 to develop early diagnosis methods for giant cell arteritis, 2018: MRC Proximity to Discovery: Protein biomarkers for polymyalgia rheumatica and giant cell arteritis. (PI: Morgan, University of Leeds), 2019: Roche: giant cell arteritis tocilizumab registry (PI: Morgan, University of Leeds). Other; Site Sub-Investigator on clinical trial in giant cell arteritis for Roche, Site Principal Investigator on clinical trial in giant cell arteritis for GSK, Site Principal Investigator and UK Chief Investigator on clinical trials (giant cell arteritis and polymyalgia rheumatica) for Sanofi. A. Bromhead: None. S. Stern: None. E. Dures: None. J. Dawson: None. M. Ndosi: None. R. Greenwood: None. J.C. Robson: None.

Background/Aims Autoimmune rheumatic conditions are multisystem chronic disorders associated with increased psychological distress. Consequences include poor medication adherence and high levels of disease activity. Psychological interventions may reduce distress and change health behaviours. We aimed to determine the effectiveness of interventions for psychological distress in patients with autoimmune rheumatic conditions. Methods This was a systematic review of effectiveness which included randomised controlled trials of psychological interventions in adults with autoimmune rheumatic conditions. We searched MEDLINE, BNI, CINAHL, EMBASE, EMCARE, PsycINFO, NICE Evidence and The Cochrane Library. Two reviewers screened titles and abstracts and assessed the methodological quality of the included studies using Cochrane Risk of Bias 2 tool. Data were extracted by one reviewer and checked by a second. In each study, the effectiveness data were determined by extracting the reported means (and standard deviation) for each group and calculating the standardised mean differences using RevMan 5.4 software (The Cochrane Collaboration, 2020). The data on primary outcomes (anxiety and depression) are reported here. Results The search identified 96 studies. The process of screening and assessing for eligibility resulted in 20 studies for inclusion. Of these, one study had an overall low risk of bias and 19 had ‘some concerns’, mainly due to inadequate blinding and no information on pre-specified analysis plan. Only eight studies reported the effects on anxiety and 10 studies reported on depression. These studies included 919 patients in total. Most interventions were based on cognitive behavioural therapy and the context of delivery ranged from face-to-face individualised treatment to online group therapy. They often included education on topics such as stress and fatigue. Interventions often trained participants to develop skills in relaxation, problem-solving, and thought reframing. Goal setting and action planning were common to help participants make behaviour changes and apply their learning. Table 1 summarises disease group, type of intervention, comparator, outcome measure, and effects. Conclusion Conclusion: Most interventions were effective in reducing anxiety and depression in autoimmune rheumatic conditions. However, given the clinical heterogeneity and ‘some concerns’ about the included quality of studies, more work is needed to understand the mechanisms of the intervention effectiveness. Disclosure J. Hulley-Mills: None. C. Sliverthorne: None. B. Jones: None. J. Hooper: None. J. Robson: None. E. Dures: None. J. Daniels: None. M. Thompson: None. M. Ndosi: None.

Introduction\ud An important aspect of self-management is patient activation (the skills, abilities and confidence someone uses to actively manage their health). The dominant method of capturing patient activation is the Patient Activation Measure (PAM) which has been integrated into many aspects of clinical practice in musculoskeletal care. However, limited research has investigated how rheumatology patients understand and perform patient activation, and how closely their perceptions align with the PAM.\ud \ud Methods\ud Seventeen patients from two rheumatology departments in South West England participated in semi-structured interviews at two timepoints. They discussed how they actively managed their health and their views on the PAM. Data on activation were analysed using framework analysis and data on the PAM were analysed using content analysis.\ud \ud Results\ud Participants self-managed with determination, finding ways to make small, sustainable behaviour changes and effectively navigate the healthcare system. They reported the value of knowing what self-management techniques suited them individually and reported benefitting from positive perceptions of their own health and good social support. Participants noted that the PAM did not always capture the fluctuating nature of their inflammatory arthritis and the collaborative nature of healthcare.\ud \ud Conclusions\ud Patients' perceptions and experiences of patient activation covered a wide range of skills, behaviours and beliefs. However, these are not always captured by the PAM. Therefore, its use as a clinical tool is best accompanied by dialogue with patients to understand their self-management.

Objectives: Fatigue is a challenging feature of all inflammatory rheumatic diseases. LIFT (Lessening the Impact of Fatigue in inflammatory rheumatic diseases: a randomised Trial) included remotely delivered personalised exercise programme (PEP) or cognitive-behavioural approach (CBA) interventions. The aim of this nested qualitative evaluation was to understand rheumatology health professionals (therapists’) perspectives of delivering the interventions in the LIFT trial. Methods: A subgroup of therapists who had delivered the personalized exercise programme (PEP) and cognitive-behavioural approach (CBA) interventions took part in semi-structured telephone interviews.Results: Seventeen therapists (13 women and 4 men) who delivered PEP (n = 8) or CBA (n = 9) interventions participated. Five themes were identified. In ‘The benefits of informative, structured training’, therapists described how they were able to practice their skills, and the convenience of having the LIFT manual for reference. When ‘Getting into the swing of it’, supporting patients gave therapists the confidence to tailor the content of the manual to each patient. Clinical supervision supported therapists to gain feedback and request assistance when required. In ‘Delivering the intervention’, therapists reported that patients valued the opportunity to talk about their fatigue and challenge their beliefs. In ‘Challenges in delivering the LIFT intervention’, therapists struggled to work in partnership with patients who lacked motivation or stopped engaging. Finally, in ‘LIFT developing clinical skills’, therapists gained confidence and professional satisfaction, seeing patients’ fatigue improve over time.Conclusion: The findings support the provision of training for rheumatology health professionals to remotely deliver fatigue-management interventions. Insights from these trials can be used to better improve clinical practice and service provision.Lay summary What does this mean for patients ? Fatigue can be a challenge in inflammatory rheumatic diseases (IRDs). The LIFT study (Lessening the Impact of Fatigue in inflammatory rheumatic diseases: a randomized Trial) explored interventions to support people with fatigue. These were: a cognitive-behavioural approach (CBA), a personalized exercise programme (PEP), or usual care. People with IRDs were chosen randomly to take part in seven sessions of CBA, seven sessions of PEP or usual care. All sessions (aside from the first PEP session) were delivered over the phone. The aim of this study was to explore therapists' experiences of delivering the intervention. Seventeen therapists (13 women and 4 men) took part; eight had delivered the PEP intervention, and 9 delivered the CBA intervention. Therapists who delivered LIFT told us they enjoyed the chance to practice their skills, and that the LIFT manual gave them the confidence to tailor the intervention to each patient. Clinical supervision was valued. Therapists also shared that LIFT improved their skills and they were happy to see patients' fatigue improve over time. These new results can inform clinical practice, and how services are provided.

Objectives We developed a brief cognitive-behavioural, one-to-one intervention to reduce fatigue impact for patients with inflammatory arthritis. This qualitative process evaluation explored intervention acceptability and potential refinements from the perspective of (i) patients who attended sessions and (ii) rheumatology health professionals (RHPs) who delivered the intervention. Methods Interviews were conducted with patients and RHPs from five NHS sites. Data were analysed using inductive thematic analysis. Results Twenty-two patients and eleven RHPs participated. Patient themes Collaborative, non-judgemental consultations: patients valued having space to reflect, where their fatigue was validated. Relevant content, but not ground-breaking: patients appreciated the opportunity to tailor content to individual priorities. Daily diaries were useful to visualise fatigue. Self-awareness: patients reported increased acceptance, sense of control, and confidence to manage fatigue. Degrees of openness to change: sessions prompted patients to engage in behaviour change. For some, complicated lives made it difficult to plan for change. RHP themes Engagement with intervention: RHPs liked training face-to-face, and sessions were more enjoyable with experience of delivery. Research versuss clinical practice: RHPs expressed concern about fitting sessions into NHS clinic appointments. It was difficult to offer follow-up sessions within two-weeks. Collaborating with patients: RHPs reported that patients engaged with the tools and strategies. Some RHPs followed the manual in a linear way, others used it flexibly. Conclusions There is potential for this brief fatigue intervention to benefit patients. Future research will focus on flexibility to fit with local services and creating educational resources to use in a range of contexts. Lay summary What does this mean for patients? This purpose of this study was to find out what patients and health professionals thought about taking part in fatigue management sessions for people with inflammatory arthritis. We discussed the sessions with 22 patients who attended sessions, and eight health professionals who were trained in and delivered the sessions. Patients told us that they liked having an opportunity to talk about their fatigue. Although the information was not always new, they liked the resources, including the daily diaries. Sessions made them think about things in their day-to-day lives that might be making their fatigue worse. For some, it gave them ideas about things to change or do differently. Health professionals liked training with other health professionals and felt more confident about the fatigue sessions with practise. Some were using the fatigue information and resources in their usual consultations. Sometimes it was difficult to make sure everyone had enough time, and to fit in all the appointments within the recommended two-week time frame. The results show that patients value the opportunity to address their fatigue with a health professional, but also the challenges of providing these sessions in clinical practice.

Objectives Fatigue can be a disabling symptom of inflammatory rheumatic diseases (IRD). LIFT (Lessening the Impact of Fatigue in inflammatory rheumatic diseases: a randomised Trial) is a randomised trial of remotely delivered cognitive-behavioural approach (CBA) or personalised exercise programme (PEP) interventions, compared with usual care. The aim of this nested qualitative study was to evaluate participants’ experiences of taking part in the intervention, including their ideas about future service delivery. Methods Semi-structured telephone interviews with a subgroup of LIFT participants to discuss their views and experiences of the interventions. Results Forty-three participants (30 women) from six sites who had participated in CBA (n = 22) or PEP (n = 21) interventions took part. Five themes were identified in the thematic analysis: In ‘Not a miracle cure, but a way to better manage fatigue’, LIFT could not cure fatigue, however, most felt better able to manage after participating. Participants valued ‘Building a therapeutic relationship’ with the same therapist throughout the intervention. In ‘Structure, self-monitoring and being accountable’, participants liked the inclusion of goal setting techniques, and were motivated by reporting back to the therapist. After taking part in the interventions, participants felt ‘Better equipped to cope with fatigue’; more confident and empowered. Lastly, participants shared ideas for ‘A tailored programme delivered remotely’, including follow-up sessions; video calling; and group-based sessions for social support. ConclusionMany participants engaged with the LIFT interventions and reported benefits of taking part. This suggests an important future role for the remote delivery of fatigue self-management. Lay summary What does this research mean for patients? Fatigue can be a disabling symptom in inflammatory rheumatic diseases (IRDs). The LIFT Study (Lessening the Impact of Fatigue in inflammatory rheumatic diseases: a randomised Trial) looked at different interventions; a cognitive-behavioural approach (CBA), Personalised Exercise Programme (PEP), or usual care. CBA sessions addressed unhelpful thoughts and feelings. The PEP sessions supported people with IRDs to gradually increase their exercise levels. People with IRDs were randomly selected to take part in seven sessions of CBA, seven sessions of PEP, or usual care. All sessions except the first PEP session were delivered remotely by phone. The aim of this study was to explore people’s experiences of taking part. Forty-three people with IRDs (30 women, 13 men) were interviewed from six UK locations. Twenty-two took part in the CBA sessions, and twenty-one took part in PEP. People with IRDs who took part in LIFT told us about a range of benefits. These included feeling less fatigue and more confidence. Those in PEP told us they felt stronger. People with IRDs shared that they liked being able to talk about their fatigue with a supportive therapist. These are encouraging results for remotely-delivered research to support people with fatigue.

OBJECTIVES To explore patient perceptions of physical activity in Giant Cell Arteritis (GCA). METHODS A multinational qualitative study, analysing interview data collected from participants from the UK (n=25) and Australia (n=11) with a definitive diagnosis of GCA from imaging or biopsy. Interview transcripts were analysed using thematic analysis to identify themes related to physical activity. This was secondary analysis of data collected to explore health-related quality of life in people with GCA. RESULTS One hundred and eight individual codes pertaining to physical activity were identified. These were grouped into two overarching themes; barriers to, and facilitators of physical activity, each with four subthemes. Barriers were categorised into: physical symptoms (including visual loss, fatigue, weakness, pain and stiffness), perceptions of personal capability (including poor stamina, confidence and mobility), negative perceptions of physical activity, and negative consequences. Facilitators of physical activity were categorised into: external facilitators (including motivation from healthcare professionals and support groups), access to appropriate facilities, personal strategies (including pacing and goal-setting) and personal facilitators (including internal motivation to improve symptoms, and positive reinforcement). CONCLUSION A range of barriers and facilitators to physical activity were identified in relation to GCA. Future work could include development of an intervention to support physical activity in patients with GCA; ideally this should be underpinned by an appropriate behavioural change framework, and co-designed with patients.

The aim of this study was to collect evidence on the current view of orthopaedic health professionals on follow-up services after hip or knee replacement. It consisted of a short survey that was distributed, following ethical approval, at the British Association for Surgery of the Knee (BASK) and the British Hip Society 2018 annual meetings with the agreement of their executive committees. One hundred and seventy-two delegates completed the surveys with a high response rate. The majority of respondents were orthopaedic consultants (mean years since qualification = 18), with 13% of the participants from an allied health professional or research background. Results showed that 87% (hips) and 78% (knees) of healthcare professionals (HCPs) supported long-term follow-up by the orthopaedic community with 33% stating that changes are needed in the intervals for review and age limits as recommended in the current NICE guidelines. Freehand comments noted concerns about skilled assessment and cost; some included suggestions for alternative models of care. Seventy-four percent of HCPs were in favour of using arthroplasty practitioner services with the majority preferring a virtual arthroplasty practitioner service. Forty-six percent of HCPs were aware of their local National Health Service plans for sustainability and transformation (STP). Of these, 61% reported that their responses were not consistent with their local STP. In conclusion, there continues to be widespread support for arthroplasty follow-up services. However, with the current pressure on healthcare resources, a re-evaluation of recommended follow-up services and their method of delivery is required.

Objectives: Total hip arthroplasty (THA) is highly successful but national registries indicate that average age has lowered and that younger patients are at higher risk of revision. Long-term follow-up of THA was historically recommended to identify aseptically failing THA, minimising the risks associated with extensive changes, but follow-up services are now in decline. A systematic review was conducted to search for evidence of the clinical or cost-effectiveness of hip arthroplasty surveillance. Methods: The study was registered with PROSPERO International Prospective Register of Systematic Reviews and conducted according to PRISMA guidelines; databases included MEDLINE and Embase, and all studies were quality assessed. Original studies (2005 to 2017) reporting follow-up of adults with THA in situ >5 years were included. Researchers extracted quantitative and qualitative data from each study. Results: For eligibility, 4,137 studies were screened: 114 studies were included in the final analysis, representing 22 countries worldwide. Data extracted included study endpoint, patient detail, loss to follow-up, revisions, scores and radiographic analysis. Six themes were derived from inductive content analysis of text: support for long-term follow-up, subgroups requiring follow-up, effect of materials/techniques on THA survival, effect of design, indicators for revision, review process. Main findings-follow-up was specifically recommended to monitor change (eg asymptomatic loosening), when outcomes of joint construct are unknown, and for specific patient subgroups. Outcome scores alone are not enough, and radiographic review should be included. Conclusion: There were no studies directly evaluating the clinical effectiveness of the long-term follow-up of THA but expert opinions from a range of international authors advocated its use for defined subgroups to provide patient-centred care. In the absence of higher level evidence, these opinions, in conjunction with emerging outputs from the national joint registries, should be used to inform services for long-term follow-up of THA.

Background/Aims There is evidence for non-pharmacological interventions to support patients to self-manage fatigue, however implementation in clinical practice is a challenge. LIFT (Lessening the Impact of Fatigue in inflammatory rheumatic diseases: a randomised Trial) is a multi-centre three-arm randomised trial using a remotely delivered cognitive-behavioural approach (CBA) or personalized exercise programme (PEP) interventions, in addition to usual care, compared to normal care alone. Interventions were delivered to patients by rheumatology health professionals using a manual, after training. The aim of this nested qualitative evaluation was to understand their perspectives of delivering the interventions. Methods A subgroup of rheumatology healthcare professionals who had delivered the CBA and PEP interventions took part in semi-structured telephone interviews to explore their experiences of training and delivery, the challenges and benefits of learning new skills, and the barriers and facilitators to supporting patients remotely (mainly by telephone) using the LIFT manual. Results A total of 17 rheumatology healthcare professionals (13 women, 4 men) from the CBA (n = 9) and PEP (n = 8) arms contributed. SB conducted an inductive thematic analysis of the data set. ED, CA, AW and KL reviewed a sub-set of transcripts. Five main themes were identified: The benefits of informative, structured training: Rheumatology healthcare professionals reflected how training, including role-play, helped them to practice their skills, even though this could feel uncomfortable. Those allocated shorter four-hour training sessions would have liked more time to practice. Many felt anxious before meeting patients for the first time but liked the manual to refer to. Getting into the swing of it: Practice gave rheumatology healthcare professionals the confidence to tailor content to individual patients’ requirements. Clinical supervision in the PEP and CBA arm supported rheumatology healthcare professionals to query their own practice, gain valuable feedback, and request assistance where needed. Benefits of telephone delivery: The initial face-to-face session enabled rheumatology healthcare professionals to build rapport with patients. Thereafter, patients seemed engaged and valued the opportunity to address their fatigue and challenge their own beliefs via the telephone. Some patients not ready to change: Rheumatology healthcare professionals struggled to work collaboratively with a minority of patients who were not willing to make changes, lacked motivation to complete tasks or stopped engaging with the intervention. LIFT developing clinical skills: Rheumatology healthcare professionals were confident that they were doing the ‘right thing’ for patients with fatigue and gained professional satisfaction seeing patients’ fatigue improve. Many felt that the skills they acquired and their experiences of remote delivery were helping them to respond to the current COVID-19 related changes in service provision. Conclusion Findings support the value of skills training for rheumatology health professionals to deliver fatigue management interventions remotely. These insights can inform service provision and clinical practice. Disclosure S.E. Bennett: None. E. Dures: None. C. Almeida: None. E. Bachmair: None. K. Lovell: None. L. Paul: None. A. Wearden: None. G.J. Macfarlane: None. N. Basu: None.

Background/Aims Fatigue is a substantial, disabling symptom of inflammatory rheumatic diseases (IRDs). LIFT (Lessening the Impact of Fatigue in inflammatory rheumatic diseases: a randomised Trial) is a multi-centre three-arm randomised trial using remotely delivered cognitive-behavioral approach (CBA) and personalised exercise programme (PEP) interventions, compared to normal care alone, with the aim to lessen the impact of fatigue in patients with IRDs. Most sessions were delivered by telephone. This nested qualitative study explored patients’ experiences of taking part in the interventions. Methods A subgroup of patients who had completed follow-up after the LIFT trial took part in semi-structured telephone interviews to discuss their views and experiences of the interventions and subsequent impact on their lives. Results Participants were purposively sampled from six UK research sites to include variation in gender, age and IRDs. A total of 47 participants (33 women, 14 men) from the PEP (n = 22) and CBA (n = 25) arms took part. SB conducted an inductive thematic analysis of the data set. ED, CA, AW and KL reviewed a sub-set of the data. Five main themes were agreed after group discussion: There is no miracle cure, but LIFT is a way to manage fatigue: participants had disabling fatigue, with substantial impact on their work and social lives. Many were keen to understand the link between their IRD and fatigue. Participants reflected that LIFT could not offer a miracle cure, but most felt that they were better able to cope with their fatigue after taking part. Building a therapeutic relationship: participants reported feeling validated by LIFT therapists who understood the impact of IRD-fatigue. They valued the continuity of interacting with the same therapist throughout the intervention. The advantages of structure, self-monitoring and being accountable: many participants liked the structured format of the interventions and the inclusion of techniques such as goal setting because self-monitoring and being accountable to the therapist were helpful. Some felt guilty if they did not meet their goals but used this as an incentive to set more realistic objectives. A new toolbox: many participants described feeling more confident and empowered after the interventions, with a new ‘toolbox’ of coping mechanisms; more motivated to socialise, exercise and better able to pace activity. PEP participants who were physically active prior to LIFT saw less benefit. LIFT going forward - a tailored remotely delivered programme: participants’ ideas included follow-up sessions at six and twelve months; the option for video calling; and group-based sessions to boost engagement and receive social support from other patients with fatigue. Conclusion Many patients engaged with the LIFT interventions and reported benefits of taking part. This suggests an important role for the remote delivery of fatigue self-management as services respond and adapt to the current pandemic. Disclosure S.E. Bennett: None. E. Dures: None. C. Almeida: None. E. Bachmair: None. K. Lovell: None. L. Paul: None. A. Wearden: None. G.J. Macfarlane: None. N. Basu: None.

Background/Aims Patients with inflammatory arthritis report fatigue as a primary symptom that affects everyday life. FREE-IA (Fatigue - Reducing its Effects through individualised support Episodes in Inflammatory Arthritis) is a feasibility study of a brief intervention (2-4 sessions of 20-30 minutes) designed to reduce fatigue impact. The intervention designed with patients and health professionals is delivered by rheumatology practitioners in one-to-one sessions, after training and using a manual. The aim of this process evaluation was to understand the perspectives of patients and practitioners in FREE-IA. Methods One-to-one telephone interviews were conducted with patients who had received the intervention and practitioners who had delivered it. Interviews were audio-recorded, transcribed and anonymised. An inductive thematic analysis approach was used to identify and analyse patterns within each data set. Results Twenty-two patients, and eight practitioners across the five sites participated. We identified four patient and three practitioner themes. Patient themes: Collaborative, non-judgemental consultations: participants reported positive relationships in which their fatigue was validated, and they were able to reflect. They expressed their preference for a responsive, flexible approach to sessions, rather than a rigid, ‘protocolised’ approach. Relevant and useful, but not ground-breaking: participants appreciated the opportunity to tailor content to their individual priorities. They found it helpful to visualise fatigue and identified daily dairies as useful. Although the content was not seen as ground-breaking, it provided focus. Insights and self-awareness: sessions increased participants’ awareness of lifestyle factors and patterns influencing their fatigue, which increased their sense of control and confidence to manage fatigue. Degrees of openness to change: sessions prompted some participants to engage in positive behaviour change or make plans for changes. However, some participants expressed frustration, explaining that it was not the right time because their lives were complicated. Practitioner themes: Engagement with the intervention: practitioners liked training face-to-face with peers and their enjoyment of the intervention increased with experience of delivery. However, for practitioners with extensive experience of providing fatigue support, the low level of treatment intensity and the manualised approach limited the perceived usefulness of the intervention. Research versus clinical practice: practitioners expressed concern about fitting sessions into clinic appointments, and it was often a challenge to offer patients a follow-up session within the proposed two-week time frame. Collaborating with patients: practitioners reported that many patients were willing to try the tools and strategies. While some practitioners followed the manual in a linear way, others used it more flexibly. Conclusion There is potential for this brief fatigue intervention to benefit patients. Future research will focus on flexibility to fit with local services and creating educational learning resources for practitioners to use in a range of contexts. Disclosure A. Berry: None. S. Bridgewater: None. B. Abbott: None. J. Adams: None. E. Dures: None.

Background/Aims Patients with inflammatory arthritis report that fatigue can be a challenging symptom to manage, with little support available. In response, we developed a brief one-to-one cognitive-behavioural manualised intervention, delivered by rheumatology health professionals (RHPs), to help patients manage their fatigue. Methods We designed a single-arm feasibility study called FREE-IA (Fatigue - Reducing its Effects through individualised support Episodes in Inflammatory Arthritis). Patients were eligible if they were ≥18 years, had a clinician confirmed diagnosis of inflammatory arthritis, scored ≥6/10 on the BRAF NRS Fatigue Impact with fatigue that they considered recurrent, frequent, and/or persistent, and were not accessing support for their fatigue. Following training, RHPs delivered 2-4 one-to-one sessions to participants. The initial two core sessions were delivered face-to-face in clinic; participants then had the option of up to two further sessions, either in clinic, by telephone or online. We proposed delivering sessions 1 and 2 within two weeks of each other, and sessions 3 and 4 in the following two weeks. Baseline data were collected before the first session (T0), and outcomes at six weeks (T1) and six months (T2). The primary outcome was fatigue impact (BRAF NRS Fatigue Effect), collected by telephone. Secondary outcomes included fatigue severity, fatigue coping, multi-dimensional impact of fatigue, disease impact and disability and measures of therapeutic mechanism (self-efficacy, and perceived confidence and autonomy to manage health). These outcomes were collected by post. This study allowed us to test the feasibility and acceptability of RHP training, study design and materials, intervention delivery and outcome collection, ahead of a possible RCT to determine intervention effectiveness. Results Eight RHPs at five hospitals delivered 113 sessions to 46 participants. Four sessions were delivered by phone and none online. Session 2 was only delivered within the two-week time frame for 37% of participants attending both core sessions. Out of a potential 138 primary and secondary outcome responses at T0, T1 and T2, there were 13 missing primary outcome responses and 27 missing secondary outcome responses. Results indicated improvements in all measures except disability at either T1 or T2, or both, with confidence intervals supporting an interpretation of improvement. Conclusion We were able to design and deliver FREE-IA training to RHPs, deliver FREE-IA sessions to patients, and collect outcomes at three time points with low levels of attrition. Outcomes in all measures except disability were in a direction to suggest improvement at T1, T2, or both. Study numbers were small, there was no control group and regression to the mean was a possibility. However, outcomes were in the direction to cautiously suggest benefit, and there is evidence of promise of the intervention. A definitive RCT is the next step to test clinical and cost effectiveness of the intervention. Disclosure S. Bridgewater: None. J. Lomax: None. B. Abbott: None. J. Adams: None. A. Berry: None. S. Creanor: None. P. Ewings: None. S. Hewlett: None. L. McCracken: None. M. Ndosi: None. J. Thorn: None. M. Urban: None. E. Dures: None.

Highlights • 91% response rate. • Eleven different scheduling regimes identified. • Typical duration ranged from three to 52 h. • Positive responses about current service provision including support for patients. • Respondents made many suggestions for improvements to patient support., Background and purpose Gynaecological brachytherapy can cause anxiety, distress and discomfort. It is not known how variation in delivery impacts women’s experiences. To inform future research an online survey was carried out to identify variations in brachytherapy and support available to women receiving treatment for locally advanced cervical cancer (LACC). Materials and methods An online survey was sent to 44 UK brachytherapy centres using the Qualtrics® survey platform. It included questions about brachytherapy scheduling, inpatient/day case treatment, anaesthetic/analgesia, non-pharmacological support and health professionals’ opinions regarding holistic care. A mixture of closed questions with pre-specified options and open questions were employed. Descriptive statistics were generated to identify variance in UK practice. Free text responses were analysed using inductive content analysis. Results Responses were received from 39/43 eligible centres (91% response rate). Brachytherapy was predominantly given on an inpatient basis at 65% and day case at 35% of centres. Eleven scheduling regimes were reported with typical duration of brachytherapy ranging from three to 52 h. The main categories identified in response to what worked well were: ‘consistency of staff’; ‘good information provision’ and ‘experienced/skilled/senior staff’. The main categories identified as needing improvement were: ‘training of different staff groups’ and ‘follow up and support’ with many suggestions for service improvements. Conclusion The survey provided a comprehensive overview of brachytherapy services for LACC demonstrating wide variability in scheduling regimes, duration of treatment and holistic care. The findings support the need to explore women’s experiences with a range of treatment regimes and anaesthesia and analgesia techniques to inform improvements to future clinical care.

Fatigue in rheumatoid arthritis (RA) is associated with inflammation, pain, disability, sleep, depression, and health beliefs, implying complex, multicausal pathways comprising differing combinations of variables. From a patient perspective, it is a common, overwhelming, and distressing symptom. From a societal perspective, fatigue is a significant predictor of high healthcare costs and the main reason for work disability and loss. This chapter will highlight the role of patients in establishing the importance of the symptom, including the proposal that it should be measured in studies of RA whenever possible. Acknowledgement of fatigue as a patient priority is a relatively recent development, and highlights the value of collaborating with patients in shaping the research agenda. There will be discussion of the scale of fatigue in RA, including data on prevalence and descriptions of its nature and impact. Research has established the unpredictable and unearned nature of RA-related fatigue with its physical, cognitive, and emotional components, and identified the associated individual and societal burden. This will be followed by conceptual models informing our understanding of the biology of rheumatoid arthritis-related fatigue, the role of bioinformatics, and the challenges of unravelling the mechanisms of this multidimensional symptom. Finally, the evidence for interventions and treatments to alleviate fatigue will be presented, with a focus on non-pharmacological approaches to support fatigue self-management.

ObjectivesIn treat to target (T2T), the patient is treated to reach and maintain specified and sequentially measured goals, such as remission or low disease activity. T2T in psoriatic arthritis (PsA) has demonstrated improved clinical and patient-reported outcomes and is recommended in European guidelines. However, most clinicians do not use T2T in PsA. This study examined the barriers and enablers to implementation in practice.MethodsSequential mixed methods comprising a qualitative design (interviews and focus group) to inform a quantitative design (survey). Qualitative data were analysed thematically, and quantitative statistics were analysed descriptively.ResultsNineteen rheumatology clinicians participated in telephone interviews or a face-to-face focus group. An overarching theme ‘Complexity’ (including ‘PsA vs Rheumatoid Arthritis’, ‘Measurement’ and ‘Resources’) and an underpinning theme ‘Changes to current practice’ (including ‘Reluctance due to organisational factors’ and ‘Individual determination to make changes’) were identified. 153 rheumatology clinicians responded to an online survey. Barriers included limited clinical appointment time to collect outcome data (54.5%) and lack of training in assessing skin disease (35%). Enablers included provision of a protocol (86.4%), a local implementation lead (80.9%), support in clinic to measure outcomes (83.3%) and training in T2T (69.8%). The importance of regular audit with feedback, specialist PsA clinics and a web-based electronic database linked to hospital/national information technology (IT) systems were also identified as enablers.ConclusionsImplementation of T2T in PsA requires an integrated approach to address the support, training and resource needs of individual clinicians, rheumatology teams, local IT systems and service providers to maximise success.

Fatigue is highly prevalent in inflammatory arthritis, and people living with the symptom have described it as overwhelming and a challenge to manage. In this article, we explore the experience, impact and non-pharmacological management of fatigue from a multi-disciplinary perspective. We start by presenting qualitative evidence from people living with fatigue, including the physical, cognitive and emotional nature of the symptom and its impact on daily life. This is followed by discussion of current conceptual models of mechanisms and factors that may cause and maintain fatigue, within and between individuals. We then address the issue of fatigue measurement and modes of assessment, which is an integral aspect of management and evaluating support provision. This leads to a review of the research evidence for non-pharmacological interventions to reduce fatigue severity and impact. Finally, we consider implementation of this evidence in clinical practice and we introduce some key practical tools and techniques.

Background Adults with fibromyalgia frequently report symptoms of cognitive dysfunction (often referred to as fibrofog). However primary research exploring cognitive dysfunction in the lives of adults with fibromyalgia is limited. The aim of this review was to (i) synthesise the qualitative literature on the lived experiences of cognitive dysfunction in adults with fibromyalgia, (ii) develop common themes through thematic analysis and (iii) identify knowledge gaps to inform future research and clinical practice in this area. Methods Seven electronic databases (MEDLINE, Embase, CINAHL, PsycINFO, Amed, Scopus and OpenGrey), reference lists of key articles and two high impact qualitative journals were searched from 1990 to November 2018. Articles were eligible for inclusion if they reported primary qualitative data exploring the experiences of cognitive dysfunction in adults with fibromyalgia. Included studies were appraised using the Critical Appraisal Skills Programme (CASP) qualitative checklist and extracted data analysed using narrative synthesis. SD conducted critical appraisal and data extraction on all included studies. FC, JL and ED reviewed five papers each. All papers were reviewed by two co-authors. Results Of the 1,413 records identified, 15 studies were selected for inclusion. These studies included 208 women and 22 men with fibromyalgia, aged 18 to 72 years and representing seven different countries. Duration of diagnosis was four months to 34 years. Fourteen studies used interviews and one used focus groups. None of the included studies focused exclusively on cognitive function in adults with fibromyalgia. Three studies identified themes specific to cognitive dysfunction and fibromyalgia symptoms. The remaining 12 studies presented relevant data intertwined with the overall lived experiences of fibromyalgia. Cognitive dysfunction, as a part of fibromyalgia, was often unpredictable. Problems with memory and concentration were most reported, were emotionally distressing and affected functional and vocational activities. Participants found communication effortful, with a negative impact on work, leisure and social activities. Stress, fear and worry around perceived cognitive changes were commonly expressed. Lost employment or changed work roles and relationships, due to cognitive difficulties, had negative impacts for many participants. The terms cognitive dysfunction and fibrofog were used interchangeably within the included studies but lacked common definition. This introduced uncertainty around whether participants and authors were describing the same phenomenon. Conclusion Adults with fibromyalgia experience unpredictable and emotionally impactful difficulties related to cognitive dysfunction. Functional impact was broad reaching, particularly around work ability and lost employment opportunities. It was unclear how cognitive symptoms in fibromyalgia related to co-morbid symptoms such as pain, fatigue and poor sleep. Further research, focusing exclusively on the full impact of cognitive function on the lives of adults with fibromyalgia is recommended to inform clinical practice. Research to establish clarity of definition of the terms cognitive dysfunction and fibrofog within fibromyalgia is highly recommended. Disclosures S. Derham None. J. Lewis None. E. Dures None. F. Cramp None.

Background People with a connective tissue disease (CTD) or systemic vasculititis have diseases which can be life and organ threatening, require complicated medication regimens and impact on all aspects of health-related quality of life. People are routinely managed across multiple medical specialities and have to navigate their way through complex health care systems. The aim of this study was to investigate current psychological and self-management support available for people with CTDs and vasculitis in rheumatology and nephrology departments in the UK. Methods An online survey of health professionals in rheumatology and nephrology departments was conducted with follow-up interviews. The survey comprised 45 multiple-choice and free-text questions. Quantitative material was analysed descriptively. Follow-up interviews were recorded, transcribed and analysed thematically, together with free-text survey responses, to identify health professionals’ perceptions on unmet needs and key improvements required. Results The online survey included 120 health professional respondents (34 % specialist nurses, 51% doctors and 12 % allied health professionals and pharmacists). Respondents worked primarily in rheumatology (52.9%) and nephrology (21.5%). Access to self-management programmes or clinics for people with CTD and vasculitis was available in 23% of rheumatology and 8% of nephrology departments. In response to the question “How well is your team providing self-management support to people with CTD and vasculitis?”, 38% of respondents reported not very well, or not well at all. Direct access to psychological support (either within their department or within the hospital) was available for patients in 76.9% of nephrology and 32.8% of rheumatology departments. Where psychological referrals were direct, the assessment of the quality of the service by health professionals was higher than when the referrals were indirect (i.e when patients were either referred to primary care or asked to self-refer) (X2=13.83, p < 0.001). Over 80% of health-professional respondents reported they would like additional training in providing self-management support. Key themes from the qualitative data included the need for dedicated psychological support within departments, self-management programmes (specifically for people with CTD and vasculitis or opening up established programmes for people with other conditions), the benefits of a whole team approach (specialist teams not individual clinicians working to empower patients to take a lead in managing their own care), individual staff training needs ( training in brief psychological interventions and support for health professionals to set up self-management programmes) and signposting to additional resources for patients and their families ( disease-specific written and online information and support from patient charities). Conclusion People with CTD and vasculitis have complex needs and systemic improvements in support are required. Patients in nephrology departments are more likely to have access to psychological support than those in rheumatology. There is inadequate access to structured self-management programmes in both nephrology and rheumatology. Disclosures J.C. Robson None. M. Shepherd None. M. Ndosi None. L. Harper None. C. Flurey None. S. Logan None. K. Austin None. E. Dures None.

Background Giant cell arteritis (GCA) is the most common vasculitis in the UK, with an incidence of 220 cases per million in adults over 50 years of age. The physical symptoms as well as the side effects of glucocorticoids may impact patients’ ability to exercise. Maintaining physical activity (PA) has been shown to be beneficial to disease activity in other inflammatory conditions and is also a specific priority for GCA patients. The aim of this project was to explore patient perceptions of physical activity in GCA. Methods Multinational qualitative study, using interviews with 36 patients from the UK (25) and Australia (11), all of whom had a definitive diagnosis from imaging or biopsy. Interviews were recorded, transcribed, and analysed using inductive thematic analysis. This is secondary analysis of data collected to explore health-related quality of life in people with GCA. Results 107 individual themes were reported by patients, which divided broadly into two overarching themes: barriers to (59) and facilitators of (48) physical activity. Four sub-themes were identified within each overarching theme. For barriers, these were: negative physical symptoms (including effects of disease flares, visual loss, fatigue, weakness, pain and stiffness), lack of physical capability (including poor stamina, confidence and mobility), negative perceptions around PA, and negative reinforcement (i.e. new physical symptoms following PA). Facilitators of physical activity were also grouped into four sub-themes: external facilitators (including motivation from healthcare professionals), access to appropriate facilities, personal strategies (including pacing and goal-setting) and personal facilitators (including internal motivation to improve symptoms, and positive reinforcement from noticing physical and psychological benefits of PA). Conclusion There are a variety of barriers to physical activity in GCA patients, including patients being fearful of exercise. In other inflammatory conditions, patients report improved symptoms following physical activity as well as wider benefits to general wellbeing and cardiovascular health. Education, motivational interviewing, and personalised strategies may be beneficial components of an intervention to support physical activity in patients with GCA. Disclosures K. Austin None. E. Dures Grants/research support; Has previously received an independent learning grant from Pfizer, however the work has been completed and the grant has been closed. C. Almeida None. F. Cramp None. K. Gilbert None. C. Guly None. C. Hill None. S. Mackie None. A. O'Brien None. R. Watts None. J. Robson None.

OBJECTIVES: Raynaud's phenomenon (RP) is the commonest manifestation of systemic sclerosis (SSc). RP is an episodic phenomenon, not easily assessed in the clinic, leading to reliance on self-report. A thorough understanding of the patient experience of SSc-RP is essential to ensuring patient-reported outcome (PRO) instruments capture domains important to the target patient population. We report the findings of an international qualitative research study investigating the patient experience of SSc-RP.METHODS: Focus groups (FGs) of SSc patients were conducted across 3 scleroderma centers in the US and UK, using a topic guide and a priori purposive sampling framework devised by qualitative researchers, SSc patients and SSc experts. FGs were audio recorded, transcribed, anonymised and analysed using inductive thematic analysis. FGs were conducted until thematic saturation was achieved.RESULTS: Forty SSc patients participated in 6 focus groups conducted in Bath (UK), New Orleans (US) and Pittsburgh (US). Seven major themes were identified that encapsulate the patient experience of SSc-RP: physical symptoms, emotional impact, triggers & exacerbating factors, constant vigilance & self-management, impact on daily life, uncertainty and adaptation. The inter-relationship of the 7 constituent themes can be arranged within a conceptual map of SSc-RP.CONCLUSION: We have explored the patient experience of SSc-RP in a diverse and representative SSc cohort and identified a complex interplay of experiences that result in significant impact. Work to develop a novel PRO instrument for assessing the severity and impact of SSc-RP, comprising domains/items grounded in the patient experiences of SSc-RP identified in this study is underway. This article is protected by copyright. All rights reserved.