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Objectives: The Covid-19 pandemic necessitated a rapid global transition towards telemedicine; yet much remains unknown about telemedicine's acceptability and safety in rheumatology. To help address this gap and inform practice, this study investigated rheumatology patient and clinician experiences and views of telemedicine., Methods: Sequential mixed methodology combined analysis of surveys and in-depth interviews. Between and within-group differences in views of telemedicine were examined for patients and clinicians using t-tests., Results: Surveys (patients n = 1340, clinicians n = 111) and interviews (patients n = 31, clinicians n = 29) were completed between April 2021 and July 2021. The majority of patients were from the UK (96%) and had inflammatory arthritis (32%) or lupus (32%). Patients and clinicians rated telemedicine as worse than face-to-face consultations in almost all categories, although >60% found it more convenient. Building trusting medical relationships and assessment accuracy were great concerns (93% of clinicians and 86% of patients rated telemedicine as worse than face-to-face for assessment accuracy). Telemedicine was perceived to have increased misdiagnoses, inequalities and barriers to accessing care. Participants reported highly disparate telemedicine delivery and responsiveness from primary and secondary care. Although rheumatology clinicians highlighted the importance of a quick response to flaring patients, only 55% of patients were confident that their rheumatology department would respond within 48 hours., Conclusion: Findings indicate a preference for face-to-face consultations. Some negative experiences may be due to the pandemic rather than telemedicine specifically, although the risk of greater diagnostic inaccuracies using telemedicine is unlikely to be fully resolved. Training, choice, careful patient selection, and further consultation with clinicians and patients is required to increase telemedicine's acceptability and safety., Trial Registration: This telemedicine study is part of a pre-registered longitudinal multi-stage trial, the LISTEN study (ISRCTN-14966097), with later Covid-related additions registered in March 2021, including a pre-registered statistical analysis plan., (© The Author(s) 2021. Published by Oxford University Press on behalf of the British Society for Rheumatology.)

Objective A limited range of neuropsychiatric symptoms have been reported in systemic autoimmune rheumatic diseases (SARDs), with varied symptom prevalence. This study aimed to investigate a wider range of potential symptoms than previous studies, compare patient self-reports with clinician estimates, and explore barriers to symptom identification. Methods Mixed methods were used. Data from SARDs patients (n  = 1853) were compared with controls (n  = 463) and clinicians (n  = 289). In-depth interviews (n  = 113) were analysed thematically. Statistical tests compared means of survey items between patients and controls, 8 different SARD groups, and clinician specialities. Results Self-reported lifetime prevalences of all 30 neuropsychiatric symptoms investigated (including cognitive, sensorimotor and psychiatric) were significantly higher in SARDs than controls. Validated instruments assessed 55% of SARDs patients as currently having depression and 57% anxiety. Barriers to identifying neuropsychiatric symptoms included: (i) limits to knowledge, guidelines, objective tests and inter-speciality cooperation; (ii) subjectivity, invisibility and believability of symptoms; and (iii) under-eliciting, under-reporting and under-documenting. A lower proportion of clinicians (4%) reported never/rarely asking patients about mental health symptoms than the 74% of patients who reported never/rarely being asked in clinic (P  < 0.001). Over 50% of SARDs patients had never/rarely reported their mental health symptoms to clinicians, a proportion underestimated at <10% by clinicians (P  < 0.001). Conclusion Neuropsychiatric symptom self-reported prevalences are significantly higher in SARDs than controls, and are greatly underestimated by most clinicians. Research relying on medical records and current guidelines is unlikely to accurately reflect patients' experiences of neuropsychiatric symptoms. Improved inter-speciality communication and greater patient involvement is needed in SARD care and research. [ABSTRACT FROM AUTHOR]

Background: The pandemic presented unique challenges for individuals with autoimmune and rheumatic diseases (AIRDs) due to their underlying condition, the effects of immunosuppressive treatments, and increased vaccine hesitancy. Objectives: The COVID‐19 vaccination in autoimmune diseases (COVAD) study, a series of ongoing, patient self‐reported surveys were conceived with the vision of being a unique tool to gather patient perspectives on AIRDs. It involved a multinational, multicenter collaborative effort amidst a global lockdown. Methods: Leveraging social media as a research tool, COVAD collected data using validated patient‐reported outcomes (PROs). The study, comprising a core team, steering committee, and global collaborators, facilitated data collection and analysis. A pilot‐tested, validated survey, featuring questions regarding COVID‐19 infection, vaccination and outcomes, patient demographics, and PROs was circulated to patients with AIRDs and healthy controls (HCs). Discussion: We present the challenges encountered during this international collaborative project, including coordination, data management, funding constraints, language barriers, and authorship concerns, while highlighting the measures taken to address them. Conclusion: Collaborative virtual models offer a dynamic new frontier in medical research and are vital to studying rare diseases. The COVAD study demonstrates the potential of online platforms for conducting large‐scale, patient‐focused research and underscores the importance of integrating patient perspective into clinical care. Care of patients is our central motivation, and it is essential to recognize their voices as equal stakeholders and valued partners in the study of the conditions that affect them. [ABSTRACT FROM AUTHOR]

Social media broadly refers to an internet-based platform that allows for the online publication of content that is shared across a virtual community or network. Over recent years, there has been growing utilization of social media in the medical community. The field of rheumatology is no different. Social media allows for the sharing of information among rheumatologists, which can be useful in online education, disseminating research findings, forming new networks of collaborators, and discussing the latest advances in the field. However, there are several challenges facing clinicians using social media. As such, regulatory bodies have produced advisory codes of conduct to ensure better awareness concerning the appropriate use of social media among clinicians. In addition, clinicians (even those who do not use social media) need to be mindful of the fact that many patients will use these online platforms to find information, and with this comes the risk of false information. In this review, we highlight the benefits and challenges facing rheumatologists in relation to the world of social media. [ABSTRACT FROM AUTHOR]

Objectives Medication adherence is critical in the successful management of lupus. There is very limited existing literature on reasons why non-adherence is not reported. This study explores the impact of current and previous medical experiences on patient satisfaction, adherence and reporting of non-adherence. Methods Mixed methodology involved thematic analysis of in-depth interviews (n  = 23) to further explore the statistically analysed quantitative survey findings (n  = 186). Results This study identified five themes: (i) physician-patient discordance and a 'hierarchy of evidence' in medication decisions; (ii) the association of adherence with satisfaction with care; (iii) the persisting impact of past adverse medical experiences (AMEs); (iv) the dynamic balance of patient-physician control; and (v) holistic care, beyond a purely medication-based focus. Improving quality of life (43% of participants) and a supportive medical relationship (24%) were the main reasons for adherence. Patient-priorities and self-reported symptoms were perceived as less important to physicians than organ-protection and blood results. Non-reporters of non-adherence, non-adherers and those with past AMEs (e.g. psychosomatic misdiagnoses) had statistically significant lower satisfaction with care. The importance of listening to patients was a key component of every theme, and associated with patient satisfaction and adherence. The mean rating for rheumatologist's listening skills was 2.88 for non-adherers compared with 3.53 for other participants (mean difference 0.65, P = 0.003). Conclusion Patients would like more weight and discussion given to self-reported symptoms and quality of life in medication decisions. Greater understanding and interventions are required to alleviate the persisting impact of past AMEs on some patients' wellbeing, behaviour and current medical relationships. [ABSTRACT FROM AUTHOR]

Objective The aim was to explore the self-reported impact of the COVID-19 pandemic on changes to care and behaviour in UK patients with systemic autoimmune rheumatic diseases, to help ensure that patient experiences are considered in future pandemic planning. Methods This was a longitudinal mixed methods study, with a cohort completing baseline surveys in March 2020 and follow-up surveys in June 2020 (n  = 111), combined with thematic analysis of the LUPUS UK forum and participant interviews (n  = 28). Results Cancellations of routine care and difficulties in accessing medical support contributed to some participants deteriorating physically, including reports of hospitalizations. The majority of participants reported that fear of COVID-19 and disruptions to their medical care had also adversely impacted their mental health. Feeling medically supported during the pandemic was correlated with multiple measures of mental health and perceptions of care, including the Warwick–Edinburgh mental well-being score (r  = 0.44, P  = 0.01). Five themes were identified: detrimental reduction in care; disparities in contact and communication (medical security vs abandonment sub-theme); perceived and actual endangerment; the perfect storm of reduced clinician ability to help and increased patient reticence to seek help; and identifying the patients most vulnerable to reduced medical care. Conclusion The diversion of resources away from chronic disease care was perceived by many participants to have caused adverse outcomes. Fear about increased vulnerability to COVID-19 was high, contributing to health-care-avoidant behaviours. This study also highlights the influence of clinician accessibility and patients feeling medically supported on multiple measures of physical and mental health. [ABSTRACT FROM AUTHOR]