Accessing care during the pandemic: A UK wide survey of people with rheumatoid arthritis and adult juvenile inflammatory arthritis during the COVID-19 pandemic.

COVID-19 drastically changed healthcare delivery models for rheumatology services. We sought to understand the impact of these changes for patients with Rheumatoid Arthritis (RA) and adult Juvenile Inflammatory Arthritis (AJIA) in established patients and those newly diagnosed during the pandemic. RESULTS: Of the 316 participants, a significant proportion regularly used analgesics (45.4%, n = 119), corticosteroids (17.9%, n = 47) and Non-Steroidal Anti-Inflammatory Drugs [(NSAIDs) (36.6%, n = 96)]. Two thirds of participants (66.5%, n = 210) did not know their Disease Activity Score-28 (DAS28). Of the remaining third, moderate disease activity (12%, n = 38) was most reported. We found that 16.8% (n = 53) felt their condition was managed well during the pandemic. The remainder felt more negatively. For the newly diagnosed cohort, 34.5% (n = 10) delayed seeking GP help because of COVID-19 concerns. Once assessed, a quarter (24.1%, n = 7) were referred to rheumatology after 4 or more consultations. We found 47% (n = 77) expressed positive opinions on remote consultations, whereas 36% (n = 59) had concerns. The lack of clinical examination (42.5%, n = 25) was flagged. Changing the dynamic from health worker to a patient centred approach was the most wished for improvement (20.3%, n = 64). CONCLUSIONS: Most participants did not know their disease activity status, which is of concern. With a push towards patient-centred and patient-led care, education and supported self-management is critically important. There is high use of NSAIDs and corticosteroids. Pathways of care underwent change with subsequent delays in specialist assessment. The introduction of patient-initiated follow-up (PIFU) and virtual consultations further distances healthcare professionals from patients and could affect outcomes.

Development of a patient-led clinic visit framework: a case study navigating a patient's journey for rheumatology outpatient clinic consultations in England and Wales.

BACKGROUND: Involving patients and members of the public in healthcare planning is beneficial for many reasons including that the outcomes focus on topics relevant to service users. The National Early Inflammatory Arthritis Audit (NEIAA) aims to improve care quality for patients with inflammatory arthritis. CASE STUDY: This paper presents a case study detailing how the NEIAA Patient Panel worked with NEIAA governance groups, the National Rheumatoid Arthritis Society and the National Axial Spondyloarthritis Society to co-create an outpatient clinic visit framework for rheumatology professionals. A framework was co-created, divided into nine sections: pre-appointment preparation, waiting area (face-to-face appointments), face-to-face consultations, physical examination, establishing a forward plan, post consultation, annual holistic reviews, virtual appointments and key considerations. Providing insight into how the multi-disciplinary team can meet the diverse needs of patients with inflammatory arthritis, this framework now informs the teaching content about people who live with physical and mental disability for Year 3 and 4 undergraduate medical students at King's College London. CONCLUSION: Patients play an important role in helping to address gaps in health service provision in England/Wales. The co-production of a clinic visit framework, informed by their own lived experience and their own expectations can lead to improved and relevant outcomes for the benefit of patients and raises awareness to medical students what matters to patients with physical disabilities when attending outpatient care.

Influence of information provided prior to switching from Humira to biosimilar adalimumab on UK patients' satisfaction: a cross-sectional survey by patient organisations.

OBJECTIVES: To investigate the perceptions and experiences of people with specific immune-mediated inflammatory diseases during the process of switching from Humira to biosimilar adalimumab. DESIGN: Cross-sectional survey. SETTING: An anonymised, self-administered, web-based survey. PARTICIPANTS: The participants were drawn from members and non-members of either the National Rheumatoid Arthritis Society, the National Axial Spondyloarthritis Society, Crohn's and Colitis UK, or Psoriasis Association. Birdshot Uveitis Society and Olivia's Vision also signposted to the survey links. RESULTS: A total of 899 people living with various immune mediated inflammatory diseases participated in this survey. Thirty-four per cent of respondents reported poor overall satisfaction with their biosimilar adalimumab after the switch, associated with complaints related to the switching process including lack of shared decision making, scarcity of information provided by or signposted to by the department instigating the switch as well as lack of training with the new injection device. Where training with the new device had been provided, there were significantly reduced reports of pain when injecting the new biosimilar (OR 0.20, 95% CI 0.07 to 0.55), side effects (OR 0.17, 95% CI 0.06 to 0.47) and difficulty in using the new injection device (OR 0.25, 95% CI 0.15 to 0.41). Self-reported side effects were reduced by (OR 0.13, 95% CI 0.05 to 0.38) when written information was provided by healthcare professionals and by (OR 0.15, 95% CI 0.05 to 0.42) with provision of verbal information. Difficulty in using the new injection device was also reduced by provision of satisfactory information such as written documents (OR 0.38, 95% CI 0.23 to 0.63) or by verbal communication with healthcare professionals (OR 0.45, 95% CI 0.27 to 0.73). Finally, provision of satisfactory written or verbal information was associated with a reduction in any negative perception regarding symptom control with the new biosimilar by (OR 0.05, 95% CI 0.004 to 0.57) and by (OR 0.15, 95% CI 0.03 to 0.84), respectively. CONCLUSIONS: Patient reported experiences of the process of switching from originator to biosimilar emphasise the importance of clear communication, training and information in order to optimise perception and maximise achievable outcomes with the new treatment.

Disease impact of rheumatoid arthritis in patients not treated with advanced therapies; survey findings from the National Rheumatoid Arthritis Society.

OBJECTIVE: The aim was to reveal the everyday impact of living with RA in people not treated with advanced therapies (i.e. biologic or targeted synthetic DMARDs). METHODS: People with RA, with disease duration >2 years, not currently treated with advanced therapies, completed an online survey promoted by the National Rheumatoid Arthritis Society. Items covered demographics, current treatment, RA flare frequency, the Rheumatoid Arthritis Impact of Disease (RAID) tool and questions reflecting work status and ability. Descriptive and multivariable regression analyses were performed. RESULTS: There were 612 responses from patients having a mean age of 59 years, 88% female, 37.7% with disease duration 2-5 years and 27.9% with disease duration 5-10 years. In the last year, 90% reported an RA flare, with more than six flares in 23%. A RAID patient acceptable state was recorded in 12.4%. Each of the seven domains was scored in the high range by >50% respondents; 74.3% scored sleep problems and 72% fatigue in the high range. A need to change working hours was reported by 70%. Multivariable analyses revealed that increasing difficulties with daily physical activities, reduced emotional and physical well-being in the past week were all significantly associated with pain, number of flares and ability to cope (P < 0.005). The RAID score was significantly predictive of the number of flares. CONCLUSION: Patients not currently treated with advanced therapies experience profound difficulties in everyday living with RA, across a broad range of measures. We advocate that patient-reported measures be used to facilitate holistic care, addressing inflammation and other consequences of RA on everyday life.

Systematic Review and Metaanalysis of the Reproducibility of Patient Self-reported Joint Counts in Rheumatoid Arthritis.

OBJECTIVE: To assess the reproducibility of patient-reported tender (TJCs) and swollen joint counts (SJCs) of patients with rheumatoid arthritis (RA) compared to trained clinicians. METHODS: We conducted a systematic literature review and metaanalysis of studies comparing patient-reported TJCs and/or SJCs to clinician counts in patients with RA. We calculated pooled summary estimates for correlation. Agreement was compared using a Bland-Altman approach. RESULTS: Fourteen studies were included in the metaanalysis. There were strong correlations between clinician and patient TJCs (0.78, 95% CI 0.76-0.80), and clinician and patient SJCs (0.59, 95% CI 0.54-0.63). TJCs had good reliability, ranging from 0.51 to 0.85. SJCs had moderate reliability, ranging from 0.28 to 0.77. Agreement for TJCs reduced for higher TJC values, suggesting a positive bias for self-reported TJCs, which was not observed for SJCs. CONCLUSION: Our metaanalysis has identified a strong correlation between patient- and clinician-reported TJCs, and a moderate correlation for SJCs. Patient-reported joint counts may be suitable for use in annual review for patients in remission and in monitoring treatment response for patients with RA. However, they are likely not appropriate for decisions on commencement of biologics. Further research is needed to identify patient groups in which patient-reported joint counts are unsuitable.

Assessment of impact of the COVID-19 pandemic from the perspective of patients with rheumatic and musculoskeletal diseases in Europe: results from the REUMAVID study (phase 1).

AIM: To assess the impact of the COVID-19 pandemic on patients with rheumatic and musculoskeletal diseases (RMDs). METHODS: REUMAVID is a cross-sectional study using an online survey developed by an international multidisciplinary patient-led collaboration across seven European countries targeting unselected patients with RMDs. Healthcare access, daily activities, disease activity and function, well-being (WHO Five Well-Being Index (WHO-5)), health status, anxiety/depression (Hospital Anxiety and Depression Scale (HADS)) and access to information were evaluated. Data were collected in April-July 2020 (first phase). RESULTS: Data from the first phase included 1800 patients with 15 different RMDs (37.2% axial spondyloarthritis, 29.2% rheumatoid arthritis, 17.2% osteoarthritis and others). Mean age was 53, 80% female and 49% had undertaken university studies. During the beginning of the pandemic, 58.4% had their rheumatology appointment cancelled and 45.6% reported not having received any information relating to the possible impact of SARS-CoV-2 infection in their RMDs, with the main source being patient organisations (27.6%).Regarding habits, 24.6% increased smoking, 18.2% raised their alcohol consumption, and 45.6% were unable to continue exercising. Self-reported disease activity was high (5.3±2.7) and 75.6% reported elevated pain. Half the patients (49.0%) reported poor well-being (WHO-5) and 46.6% that their health had changed for the worse during lockdown. According to HADS, 57.3% were at risk of anxiety and 45.9% of depression. CONCLUSION: Throughout the first wave of the COVID-19 pandemic, patients with RMDs have experienced disruption in access to healthcare services, poor lifestyle habits and negative effects on their overall health, well-being and mental health. Furthermore, information on COVID-19 has not reached patients appropriately.

Arthritis prevention in the pre-clinical phase of RA with abatacept (the APIPPRA study): a multi-centre, randomised, double-blind, parallel-group, placebo-controlled clinical trial protocol.

TRIAL DESIGN: We present a study protocol for a multi-centre, randomised, double-blind, parallel-group, placebo-controlled trial that seeks to test the feasibility, acceptability and effectiveness of a 52-week period of treatment with the first-in-class co-stimulatory blocker abatacept for preventing or delaying the onset of inflammatory arthritis. METHODS: The study aimed to recruit 206 male or female subjects from the secondary care hospital setting across the UK and the Netherlands. Participants who were at least 18 years old, who reported inflammatory sounding joint pain (clinically suspicious arthralgia) and who were found to be positive for serum autoantibodies associated with rheumatoid arthritis (RA) were eligible for enrolment. All study subjects were randomly assigned to receive weekly injections of investigational medicinal product, either abatacept or placebo treatment over the course of a 52-week period. Participants were followed up for a further 52 weeks. The primary endpoint was defined as the time to development of at least three swollen joints or to the fulfilment of the 2010 American College of Rheumatology/European League Against Rheumatism (ACR/EULAR) classification criteria for RA using swollen but not tender joints, whichever endpoint was met first. In either case, swollen joints were confirmed by ultrasonography. Participants, care givers, and those assessing the outcomes were all blinded to group assignment. Clinical assessors and ultrasonographers were also blinded to each other's assessments for the duration of the study. CONCLUSIONS: There is limited experience of the design and implementation of trials for the prevention of inflammatory joint diseases. We discuss the rationale behind choice and duration of treatment and the challenges associated with defining the "at risk" state and offer pragmatic solutions in the protocol to enrolling subjects at risk of RA. TRIAL REGISTRATION: Current Controlled Trials, ID: ISRCTN46017566 . Registered on 4 July 2014.

Representativeness of a digitally engaged population and a patient organisation population with rheumatoid arthritis and their willingness to participate in research: a cross-sectional study.

OBJECTIVES: To describe (1) the representativeness of (a) users of an online health community (HealthUnlocked.com (HU)) with rheumatoid arthritis (RA) and (b) paid members of an RA patient organisation, the National Rheumatoid Arthritis Society (NRAS), compared with the general RA population; and (2) the willingness of HU users with RA to participate in types of research (surveys, use of an app or activity tracker, and trials). METHODS: A pop-up survey was embedded on HU to determine the characteristics of users and their willingness to participate in research. An anonymous data set of NRAS member characteristics was provided by the NRAS (N=2044). To represent the general RA population, characteristics of people with RA were identified from the Clinical Practice Research Datalink (CPRD) (N=20 594). Cross-sectional comparisons were made across the three groups. RESULTS: Compared with CPRD, HU respondents (n=615) were significantly younger (49% aged below 55 years compared with 23% of CPRD patients), significantly more deprived (21% in the most deprived Townsend quintile compared with 12% of CPRD patients) and had more recent disease, with 62% diagnosed between 2010 and 2016 compared with 37% of CPRD patients. NRAS members were more similar to the CPRD, but significantly under-represented those aged 75 years or over and over-represented those aged 55-75 years compared with the CPRD. High proportions of HU users were willing to participate in future research of all types. CONCLUSIONS: NRAS members were broadly representative of the general RA population. HU users were younger, more deprived and more recently diagnosed. HU users were willing to participate in most types of research.