Qualitative interview study of rheumatology patients' experiences of COVID-19 shielding to explore the physical and psychological impact and identify associated support needs.

OBJECTIVE: Many clinically extremely vulnerable rheumatology patients have only recently ceased shielding from COVID-19, while some continue to minimise in-person contact. The objective of this study was to understand the impact of shielding and associated support needs in patients with rheumatic conditions and to understand how rheumatology teams can meet these needs both currently and in future pandemics. DESIGN, PARTICIPANTS AND SETTING: The study was conducted in the Southwest of England using a case-study design. The participants were 15 patients with rheumatic conditions who were advised to shield and/or chose to shield at any time during the COVID-19 pandemic. METHODS: Qualitative data collected via telephone and online semi-structured interviews and analysed using reflexive thematic analysis. RESULTS: Fifteen interviews were conducted. Three main themes represent the data:'Just shove them over there in the corner' captures changes in patients' self-perception. They felt different to most other people, vulnerable and left behind. The initial sense of shock was followed by a sense of loss as changes became long term.'A long and lonely road' captures patients' psychological isolation due to a perceived lack of understanding and support. This included having to prove their health status and justify their shielding behaviours, which impacted their relationships. At times, they felt abandoned by their healthcare providers.'You can't just flip a switch' captures the difficulty of getting back to pre-pandemic normal after shielding. Patients did not recognise themselves physically and mentally. They wanted to collaborate with health professionals and identified the need for specific guidance to support their recovery. CONCLUSION: Patients are dealing with lasting physical and mental effects from shielding and consequences of delayed healthcare. Health professionals need time and resources to ask about patients' well-being, identify their health needs and refer/signpost to appropriate sources of support.

Pain catastrophizing in rheumatic diseases: prevalence, origin, and implications.

Pain is a crucial factor in rheumatic disorders, and reducing it is a primary goal of successful treatment. Adaptive pain-coping strategies can enhance this improvement, but maladaptive approaches such as pain catastrophizing may worsen overall patient well-being. This narrative review aims to provide a concise overview of the existing knowledge on pain catastrophizing in the most prevalent specific rheumatic disorders. The objective of this study was to improve understanding of this phenomenon and its implications, as well as to pinpoint potential directions for future research. We conducted searches in the MEDLINE/PubMed, SCOPUS, and DOAJ bibliography databases to identify articles related to pain catastrophizing in rheumatoid arthritis, psoriatic arthritis, axial spondylarthritis, systemic sclerosis, systemic lupus erythematosus, Sjögren's syndrome, juvenile idiopathic arthritis, and osteoarthritis (non-surgical treatment). Data extraction was performed on November 1, 2023. The investigators screened the identified articles to determine their relevance and whether they met the inclusion criteria. Following a bibliography search, which was further expanded by screening of citations and references, we included 156 records in the current review. The full-text analysis centred on pain catastrophizing, encompassing its prevalence, pathogenesis, and impact. The review established the role of catastrophizing in amplifying pain and diminishing various aspects of general well-being. Also, potential treatment approaches were discussed and summarised across the examined disorders. Pain catastrophizing is as a significant factor in rheumatic disorders. Its impact warrants further exploration through prospective controlled trials to enhance global patient outcomes.

Factors Associated With Distress Related to Perceived Dignity in Patients With Rheumatic Diseases.

BACKGROUND: The loss of perceived dignity is an existential source of human suffering, described in patients with cancer and chronic diseases and hospitalized patients but rarely explored among patients with rheumatic diseases (RMDs). We recently observed that distress related to perceived dignity (DPD) was present in 26.9% of Mexican patients with different RMDs. The study aimed to investigate the factors associated with DPD. METHODS: This cross-sectional study was performed between February and September 2022. Consecutive patients with RMDs completed patient-reported outcomes (to assess mental health, disease activity/severity, disability, fatigue, quality of life [QoL], satisfaction with medical care, and family function) and had a rheumatic evaluation to assess disease activity status and comorbidity. Sociodemographic variables and disease-related and treatment-related variables were retrieved with standardized formats. DPD was defined based on the Patient Dignity Inventory score. Multivariate regression analysis was used. RESULTS: Four hundred patients were included and were representative of outpatients with RMDs, while 7.5% each were inpatients and patients from the emergency care unit. There were 107 patients (26.8%) with DPD. Past mental health-related comorbidity (Odds Ratio [OR]: 4.680 [95% Confidence Interval [CI]: 1.906-11.491]), the number of immunosuppressive drugs/patient (OR: 1.683 [95% CI: 1.015-2.791]), the physical health dimension score of the World Health Organization Quality of Life-Brief questionnaire (WHOQOL-BREF) (OR: 0.937 [95% CI: 0.907-0.967]), and the emotional health dimension score of the WHOQOL-BREF (OR: 0.895 [95% CI: 0.863-0.928]) were associated with DPD. CONCLUSIONS: DPD was present in a substantial proportion of patients with RMDs and was associated with mental health-related comorbidity, disease activity/severity-related variables, and the patient QoL.

Collating the voice of people with autoimmune diseases: Methodology for the Third Phase of the COVAD Studies.

INTRODUCTION: The growing recognition of holistic patient care highlights the various factors shaping the quality of life of individuals with autoimmune and rheumatic diseases (AIRDs). Beyond the traditional disease measures, there is an emerging acknowledgment of the less-explored aspects, including subjective well-being, social determinants of health, comorbidities, mental health, and medication adherence. Moreover, digital health services have empowered patients to engage actively in decision-making alongside clinicians. To explore these domains within the context of AIRDs, the "Collating the Voice of People with Autoimmune Diseases" COVAD survey was conceived, a successor of the previous two COVAD surveys. In this document, we present the study protocol in comprehensive detail. METHODS: The COVAD-3 survey is a cross-sectional patient self-reported e-survey incorporating multiple widely accepted scales/scores to assess various aspects of patients' lifestyles objectively. To ensure the survey's accuracy and usability across diverse regions, it will be translated into multiple languages and subjected to rigorous vetting and pilot testing. It will be distributed by collaborators via online platforms and data will be collected from patients with AIRDs, and healthy individuals over eight months. Data analysis will focus on outcome measures related to various social, demographic, economic, and psychological factors. CONCLUSION: With the increasing awareness to adopt a holistic treatment approach encompassing all avenues of life, the COVAD-3 survey aims to gain valuable insights into the impact of social, demographic, economic, and psychological determinants of health on the subjective well-being in patients with AIRDs, which will contribute to a better understanding of their overall health and well-being.

Is there an Association between Complementary and Alternative Medicine use and Trust in Physicians in Patients with Rheumatic Diseases?

INTRODUCTION: Generally, patients with chronic rheumatic diseases use complementary and alternative medicine (CAM) in addition to their conventional treatments to manage their health. Discussing these treatments with their physician is still rare, which might be directly related to patients' trust toward them. AIM: The primary objective of this study was to assess the association between patients' trust in their physician and the use of complementary and alternative medicine among patients with chronic inflammatory rheumatic diseases. As secondary objectives, to estimate the prevalence of CAM use, and to identify the associated factors with their use and with trust in physicians. METHODS: This is a cross-sectional study, which included patients with established chronic inflammatory rheumatic diseases, at the University Hospital Center in Tangier. The questionnaire included demographic and clinical information, use of conventional therapy, complementary and alternative therapy, as well as interpersonal trust in patient-physician relationships using the Trust in Physician Scale (TPS). A regression analysis was conducted to identify factors associated with CAM use and with trust in physicians. RESULTS: The study included 189 patients. 57.14% of patients reported using complementary medicine at least once, most patients were women (77.78%), mean age was 46.67 ± 13.25 years with an average course of the disease of 11.11 ± 9.23 years. The most frequently used CAM treatments were cupping therapy, massage and the ingestion of a mixture of plants. Mean ± SD Trust in Physician Scale was 47.64 ± 7.2. There was no significant difference between CAM users vs. non-users (48.08 ± 6.9 vs 47.04 ± 7.4; p = 0.35). In uni and multivariate analysis, a low level of education was significantly associated with the use of CAM. However, no statistically significant difference was found with trust in physicians (OR = 1.020, 95% CI (0.978-1.063), p = 0.354). CONCLUSION: CAM therapy is common in patients with chronic inflammatory rheumatic diseases. No statistically significant association was found with trust in physicians, it was rather observed with level of education.

Influencia psicoemocional de la pandemia por COVID-19 en la experiencia farmacoterapéutica de los pacientes con patologías reumáticas / Psycho-emotional influence of COVID-19 pandemic on medication experience of patients with rheumatic diseases

Objetivo: Realizar una revisión bibliográfica para conocer el impacto de la influencia psicoemocional de la pandemia sobre la experiencia farmacoterapéutica de pacientes con patologías reumáticas tratados con fármacos antirreumáticos modificadores de la enfermedad. Métodos: Se seleccionaron artículos con metodología cualitativa, cuantitativa o mixta disponibles en inglés o castellano. Las bases de datos consultadas fueron Medline, Cochrane Library y PsycInfo. Se eligieron como términos MeSH para realizar la búsqueda: “COVID-19”, “Rheumatic Diseases”, “Qualitative”. Resultados: Se localizaron 8 publicaciones. Se examinaron títulos y resúmenes incluyendo 3 artículos y excluyendo 5. Emergieron otros 3 artículos que cumplían criterios de inclusión pero carecían de los términos MeSH seleccionados. Se analizaron un total de 6 artículos. Conclusiones: La pandemia y el aislamiento social han impactado en la salud mental de los pacientes con patologías reumáticas desencadenando como respuestas emocionales ansiedad, fatiga y estrés. En la mayoría de casos éstos han mantenido su tratamiento. Se distingue su autogestión y conocimiento de la enfermedad y la conciencia acerca de la importancia de continuar con su tratamiento para mantener la estabilidad de su patología. (AU)

Objective: To review the scientific literature concerning psycho-emotional impact of the COVID-19 pandemic on the medication experience of patients with rheumatic diseases treated with disease-modifying antirheumatic drugs. Methods: Articles selected were qualitative, quantitative or mixed methodology available in English or Spanish. Databases consulted were Medline, Cochrane Library and PsycInfo. «COVID-19», «Rheumatic Diseases», «Qualitative» MeSH terms were chosen to perform the search. Results: 8 publications were located. Titles and abstracts were examined including 3 articles and excluding 5. Another 3 articles emerged that met the inclusion criteria but lacked the selected MeSH terms. A total of 6 articles were analyzed. Conclusions: Pandemic and social isolation have impacted on mental health of patients with rheumatic diseases, triggering anxiety, fatigue and stress as emotional responses. In most cases they maintained their treatment. Self-management and knowledge about their disease and awareness of the importance of continuing treatments to maintain the stability of their pathology are distinguished. (AU)

Isolation in patients with inflammatory rheumatic diseases during COVID-19 pandemic compared to healthy individuals: a questionnaire survey.

As a result of the pandemic, many patients with an inflammatory rheumatic disease (IRD) have isolated themselves. The lack of disease management together with fear of infection could lead to changes in physical- and mental health. The aim of this study was to evaluate the social- and health behaviour in patients with an IRD compared with the behaviour of healthy individuals during the COVID-19 pandemic. The study was a questionnaire survey answered by patients with an IRD and healthy individuals (HI). The questionnaire contained seven sections with questions regarding COVID-19 and quality of life including SF-36, EQ-5D-5L, and visual analogue scale (VAS) pain, fatigue and global health. Of 1663 invited participants, 661 patients with IRD and 266 HI were included in the analyses. Patients with an IRD felt more isolated during the COVID-19 pandemic compared with HI (IRD: 9.5% (61/644), HI: 3.1% (8/259), p-value = 0.001). More HI (5.4%) had been infected with COVID-19 than patients with an IRD (1.7%). Among patients with an IRD those with worse self-reported disease activity outcomes (VAS pain, fatigue and global health, all p-value < 0.001), worse social functioning and emotional well-being were more isolated than individuals with low disease activity. Patients with an IRD feel more isolated during the COVID-19 pandemic compared to HI. Isolation seems to be most pronounced in patients with worse disease related patient-reported outcomes and lower quality of life.

Exploring the intersection of adverse childhood experiences, pediatric chronic pain, and rheumatic disease.

BACKGROUND: While the general relationship between ACEs and the development of chronic pain has become increasingly clear, how ACEs may shape a child's clinical presentation with regards to chronic pain has yet to be fully expounded. We aimed to determine the association between ACEs and clinical manifestations of pediatric chronic pain and explore the interaction of ACEs and pediatric rheumatic disease among youth with chronic pain on health-related outcomes. METHODS: We conducted a cross-sectional cohort study of patients aged ≤18 years with chronic pain seen in a pediatric rheumatology amplified pain clinic between August 2018 and July 2020. We stratified subjects into three groups: no ACEs, one ACE, and ≥ 2 ACEs. We assessed clinical signs and symptoms associated with the presence of ACEs using Chi-square or Wilcoxon-rank test. The association between ACEs as well as other variables of interest with functional impairment was tested using simple and multivariable linear regression. RESULTS: Of the 412 patients included, more than 75% of patients reported at least one ACE. Most frequent included history of mental illness in a first degree relative (56%) and parental divorce or separation (20%). Those with ≥2 ACEs had more somatic symptoms, worse functional disability, and a higher proportion of mental health conditions. There appeared to be a dose dependent interaction between ACEs and functional disability from co-morbid rheumatologic disease. In multivariable regression, higher verbal pain score, symptom severity score (SSS), and presence of autonomic changes were associated with estimated average increase in FDI score (ß = 1.05, 1.95 and 4.76 respectively; all p < 0.01). CONCLUSION: Children with chronic pain and/or rheumatologic diseases who are exposed to ACEs are at increased risk of greater symptomatology, functional disability, and somatization of symptoms. Our findings indicate an ongoing need for systemic evaluation of ACEs in children with chronic pain and/or rheumatic disease and incorporation of trauma-based care.

Quality of life of patients with rheumatic diseases during the COVID-19 pandemic: The biopsychosocial path.

BACKGROUND: Previous models that assess quality-of-Life (QoL) in patients with rheumatic diseases have a strong biomedical focus. We evaluated the impact of COVID-19 related-health care interruption (HCI) on the physical, psychological, social relationships and environment QoL-dimensions, and explored factors associated with QoL when patients were reincorporated to the outpatient clinic, and after six-month follow-up. PATIENTS AND METHODS: Study phase-1 consisted of a COVID-19 survey administered from June 24th-October 31st 2020, to outpatients with rheumatic diseases who had face-to-face consultation at outpatient clinic reopening. Study phase-2 consisted of 3 consecutive assessments of patient´s QoL (WHOQOL-BREF), disease activity/severity (RAPID-3), and psychological comorbidity/trauma (DASS-21 and IES-R) to patients from phase-1 randomly selected. Sociodemographic, disease and treatment-related information, and comorbidities were obtained. Multiple linear regression analysis identified factors associated with the score assigned to each WHOQOL-BREF dimension. RESULTS: Patients included (670 for phase-1 and 276 for phase-2), had primarily SLE and RA (44.2% and 34.1%, respectively), and all the dimensions of their WHOQOL-BREF were affected. There were 145 patients (52.5%) who referred HCI, and they had significantly lower dimensions scores (but the environment dimension score). Psycho-emotional factors (primarily feeling confused, depression and anxiety), sociodemographic factors (age, COVID-19 negative economic impact, years of scholarship, HCI and having a job), and biomedical factors (RAPID-3 score and corticosteroid use) were associated with baseline QoL dimensions scores. Psycho-emotional factors showed the strongest magnitude on dimensions scores. Most consistent predictor of six-month follow-up QoL dimensions scores was each corresponding baseline dimension score, while social determinants (years of scholarship and having a job), emotional factors (feeling bored), and biomedical aspects (RAPID 3) had an additional impact. CONCLUSIONS: HCI impacted the majority of patient´s QoL dimensions. Psycho-emotional, sociodemographic and biomedical factors were consistently associated with QoL dimensions scores, and these consistently predicted the QoL trajectory.

(Un)disclosed. Disease disclosure in people living with rheumatic diseases: An exploratory study.

OBJECTIVE: Little is known about disease-related disclosure (DD) in patients with rheumatic musculoskeletal diseases (RMDs). We aim to investigate DD behaviors and to explore which socio-demographic, clinical and psychological factors play a role in this self-disclosure process among patients with RMDs. METHODS: A cross-sectional Italian nationwide study captured DD in RMDs in different contexts (workplace, family, friends, partner, social networks). An ad hoc survey was developed and disseminated by the Patients' Association ALOMAR ODV (Lombard Association for Rheumatic Diseases) between June and July 2020. Patient demographics, clinical data, and questionnaires assessing anxiety, depression, anticipated stigma, patient health engagement, perceived social support, and perceived general health status were collected. RESULTS: There were 376 rheumatic patients who completed the survey. There were 73.9% of the participants who talk to others about their RMD "sometimes"; 18.7% disclose their RMD "always/very often", while 7.4% "never" talk about their RMD. A significant association was detected between DD and both perceived visibility (P = .04) and psychological support (P = .01). Moreover, participants who never/sometimes disclose their RMD reported significantly lower scores in the "Total" Social Support (P < .01) and in the "Friends" subscale (P < .001) compared to others. Psychological support and the "Friends" subscale were the only significant predictors of DD (both P = .002). CONCLUSIONS: The majority of RMD patients disclosed their disease "sometimes". The DD behavior is not associated with any specific demographic or clinical variables. Further research on the subject might help to foster better DD decision-making processes for rheumatic patients in different contexts of daily life.

Attitudes of patients with a rheumatic disease on drug use in the COVID-19 pandemic.

BACKGROUND: Anti-rheumatic drugs can increase the predisposition to infection, and patients may be unaware of continuing their treatment during the COVID-19 pandemic. OBJECTIVE: This study aimed to assess whether patients maintain their treatment for rheumatic conditions during the pandemic period and determine the factors responsible for discontinuation. METHODS: Patients were randomly selected from the prospectively collected database of our tertiary referral center. The patients were interviewed by telephone through a standardized closed-ended questionnaire, which is targeting the continuity of the treatment plan and the considerations related to the individual choice. The patients were asked whether they hesitated to visit the hospital for follow-up or intravenous drug administration. RESULTS: A total of 278 patients completed the questionnaire. While 62 of the patients (22.3%) had reduced or interrupted the treatment, only 11 patients (3.9%) stopped the treatment completely. A significant difference was observed between the duration of illness and the discontinuation of treatment. (p = 0.023) There was a significant difference in disease activity between the group that stopped treatment and continued treatment. (p = 0.001) There was no statistically significant difference in other demographic characteristics. One hundred thirty-five patients (48.6%) made the treatment decision by themselves, and 80% continued the treatment. Reasons for stopping the treatment were anxiety (48.4%), not being able to go to the hospital for intravenous treatment (45.1%), and not being able to find the drug (6.5%). CONCLUSION: Since patients with long-term illnesses were found to be significantly more likely to stop their treatment, this group of patients should be monitored.

Mental health in patients with rheumatic diseases related to COVID-19 pandemic: Experience in a tertiary care center in Latin America.

OBJECTIVE: To determine the factors associated with anxiety, depression, and concern within the COVID-19 pandemic in a population with autoimmune diseases. METHODS: A telephonic survey was conducted during the early stages of the pandemic in a tertiary care center, which included patients with systemic autoimmune diseases. Mental health variables were assessed with Patient Health Questionnaire 2, General Anxiety Disorder 7 scores, and pandemic-related concern questions. Sociodemographic aspects were also evaluated. RESULTS: Of the total 334 participants, 291 (87.1%) were women, with a median age of 46 years; systemic lupus erythematosus (SLE) was the most frequent diagnosis (144, 43.2%); 44 patients (13.2%) showed depression and 32 (9.6%) anxiety. The variables associated with depression were all the pandemic concern items, body mass index, anxiety, and a higher COVID-19 symptom score. Anxiety was associated with depression, all pandemic concern items, and a higher COVID-19 symptom score. Women presented higher scores in all concern items. The SLE group presented higher scores in concern questions and difficulty finding medication. CONCLUSION: During the COVID-19 outbreak, rheumatic patients are vulnerable to psychiatric conditions, which makes it imperative for physicians who treat these patients to pay careful attention in order to detect them promptly and to settle coping strategies.

COVID-19 vaccine hesitancy in patients with systemic autoimmune rheumatic disease: an interview-based survey.

Patients with a systemic autoimmune rheumatic disease (AIRD) are vulnerable to SARS Cov-2 infection. Vaccination against this infection can prevent the patients from developing severe disease. But vaccine hesitancy in this group can emerge as a hurdle. So there is a need to understand the perception regarding vaccination in AIRD patients. The study is an interview-based survey done in AIRD patients and a control group from the general population. The questionnaire included the subject's demographic details, duration, diagnosis, the activity of AIRD, and questions regarding the perception of the vaccination. The survey included 280 patients with AIRD and 102 control subjects. 54% (152/280) of the patients and 67% (68/102) of the controls were willing to get vaccinated (p = 0.03). Patients > 45-years of age were more willing to vaccinate than those with age ≤ 45-years (61.9% vs. 44.8%; p = 0.001). Patients with lower education had more vaccine hesitancy than those with graduation and above (38% vs. 69%; p < 0.001). The common reason for vaccine hesitancy was not-yet-decided, fear related to vaccine side-effects, and disease worsening. 29% (82/280) patients were already vaccinated, out of which 35% (35/82) had mild events (fever/myalgia/headache). AIRD patients had fewer side effects than controls, and disease flare was seen in only one patient. Thus, educating AIRD patients regarding the pros and cons of vaccination, particularly concerning immunological disease, can help us overcome vaccine hesitancy. The message should clearly penetrate that there is a negligible risk of AIRD-flares with the COVID-19 immunization and the side effects are mild and manageable.

Rheumatology university faculty opinion on coronavirus disease-19 (COVID-19) vaccines: the vaXurvey study from Egypt.

OBJECTIVES: The aim of the present work was to explore the perspectives of Egyptian Rheumatology staff members as regards the coronavirus disease-19 (COVID-19) vaccine. METHODS: The survey is composed of 25 questions. Some questions were adapted from the global rheumatology alliance COVID-19 survey for patients. RESULTS: 187 rheumatology staff members across Egypt from 18 universities and authorizations actively participated with a valid response. The mean time needed to complete the survey was 17.7 ± 13 min. Participants were 159 (85%) females (F:M 5.7:1). One-third agreed that they will be vaccinated once available, 24.6% have already received at least one dose, 29.4% are unsure while 16% will not take it. Furthermore, 70.1% agreed that they will recommend it to the rheumatic diseases (RD) patients once available, 24.1% are not sure while 5.9% will not recommend it. RD priority to be vaccinated against COVID-19 in descending order include SLE (82.9%), RA (55.1%), vasculitis (51.3%), systemic sclerosis (39.6%), MCTD (31.6%), Behcet's disease (28.3%). The most common drugs to be avoided before vaccination included biologics (71.7%), DMARDs (44.4%), biosimilars (26.7%), IVIg (17.1%) and NSAIDs (9.1%). CONCLUSIONS: The results of the study and specifically the low rate of acceptability are alarming to Egyptian health authorities and should stir further interventions to reduce the levels of vaccine hesitancy. As rheumatic disease patients in Egypt were not systematically provided with the vaccine till present, making the vaccine available could as well enhance vaccine acceptance. Further studies to investigate any possible side effects, on a large scale of RD patients are warranted.

Cluster analysis reveals three main patterns of beliefs and intention with respect to SARS-CoV-2 vaccination in patients with autoimmune and inflammatory diseases.

INTRODUCTION: Given the COVID-19 pandemic, it is crucial to understand the underlying behavioural determinants of SARS-CoV-2 vaccine hesitancy in patients with autoimmune or inflammatory rheumatic diseases (AIIRDs). We aimed to analyse patterns of beliefs and intention regarding SARS-CoV-2 vaccination in AIIRD patients, as a mean of identifying pragmatic actions that could be taken to increase vaccine coverage in this population. METHODS: Data relating to 1258 AIIRD patients were analysed using univariate and multivariate logistic regression models, to identify variables associated independently with willingness to get vaccinated against SARS-CoV-2. Subsets of patients showing similar beliefs and intention about SARS-CoV-2 vaccination were characterized using cluster analysis. RESULTS: Hierarchical cluster analysis identified three distinct clusters of AIIRD patients. Three predominant patient attitudes to SARS-COV-2 vaccination were identified: voluntary, hesitant and suspicious. While vaccine willingness differed significantly across the three clusters (P < 0.0001), there was no significant difference regarding fear of getting COVID-19 (P = 0.11), the presence of comorbidities (P = 0.23), the use of glucocorticoids (P = 0.21), or immunocompromised status (P = 0.63). However, patients from cluster #2 (hesitant) and #3 (suspicious) were significantly more concerned about vaccination, the use of a new vaccine technology, lack of long-term data in relation to COVID-19 vaccination, and potential financial links with pharmaceutical companies (P < 0.0001 in all) than patients from cluster #1 (voluntary). DISCUSSION: Importantly, the differences between clusters in terms of patient beliefs and intention was not related to the fear of getting COVID-19 or to any state of frailty, but was related to specific concerns about vaccination. This study may serve as a basis for improved communication and thus help increase COVID-19 vaccine coverage among AIIRD patients.

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.

Willingness to get the COVID-19 vaccine among patients with rheumatic diseases, healthcare workers and general population in Turkey: a web-based survey.

OBJECTIVES: Vaccination against COVID-19 emerges as an effective strategy for combating the pandemic. While many of our patients with rheumatic diseases (RD) wonder whether it is safe to get the vaccine, vaccine hesitancy is rising among the general population. We assessed the willingness to get vaccination and its probable predictors among patients with RD compared to healthcare workers and a sample from the general population. METHODS: We conducted a web-based questionnaire survey in a cross-sectional design in 3 groups of participants just before the mass vaccination program in Istanbul, Turkey. The questionnaire sought socio-demographic variables, COVID-19 related risk factors, willingness to get vaccination, and concerns and thoughts about vaccine. COVID-19 anxiety scale (CAS) was also evaluated. RESULTS: We studied in total 732 patients with RD (Group 1), 763 individuals representing general population (Group 2) and 320 hospital workers (Group 3). Dysfunctional anxiety related to COVID-19 was found in 4.9%, 3.8% and 4.1%, in Group 1, 2 and 3, respectively. Of the patients with RD, 29.2% were willing to be vaccinated, 19.0% were unwilling and 51.8% were undecided. These were somewhat similar among the general population (yes: 34.6%, no: 23.3% and unsure: 42.1%), with significantly less undecided individuals (p < 0.001). On the other hand, hospital workers were significantly more willing (yes: 52.5%, no: 20.9% and unsure: 26.6%) (p < 0.001). Main concerns were probable side effects, unknown scientific results and having no trust. Being male, older age, working in a hospital, not having contracted COVID-19 and high scores on CAS were found to be independently associated with willingness. CONCLUSIONS: The low rate of vaccine acceptance among patients with RD, as well as general population sampling is worrying. Healthcare policies should aim to implement communication, promote confidence and increase demand for COVID-19 vaccine.

Increased influenza vaccination rates in patients with autoimmune rheumatic diseases during the Covid-19 pandemic: a cross-sectional study.

To assess non-compliance and potential changes in seasonal flu vaccination coverage before and during the Covid-19 pandemic in patients with autoimmune rheumatic diseases (ARDs). Consecutive patients with ARDs followed-up in 2 tertiary hospitals were telephone-interviewed (December 12-30, 2020) regarding seasonal flu vaccination during the 2019/20 and 2020/21 time periods. Self-reported disease flares that occurred after flu vaccination, as well as reasons for non-vaccination were recorded. One thousand fifteen patients were included. The rate of flu vaccination increased from 76% before to 83% during the COVID-19 pandemic (p = 0.0001). The rate of self-reported disease flares was < 1% among vaccinated patients. Reasons for not vaccination in both periods, respectively, included: 'was not recommended by their rheumatologists' (35.0vs.12.2%, p < 0.0001), 'did not feel that they would have any benefit' (36.9 vs. 32.6%), felt unsafe to do so (27.5 vs. 30.2%), or other reasons (18.9 vs. 23.8%). By multivariate analysis, age [OR = 1.03 (95% CI 1.02-1.04)] vs. [1.04 (95% CI 1.02-1.05)] and treatment with biologics [OR = 1.66 (95% CI 1.22-2.24) vs. [1.68 (95% CI 1.19-2.38)] were independent factors associated with vaccination in both periods. These findings, although are temporally encouraging, emphasize the need for continuous campaigns aiming at increasing patients' and physicians' awareness about the benefits of vaccination.

The impact of the COVID-19 pandemic on people with rheumatic and musculoskeletal diseases: insights from patient-generated data on social media.

OBJECTIVES: During the COVID-19 pandemic, much communication occurred online, through social media. This study aimed to provide patient perspective data on how the COVID-19 pandemic impacted people with rheumatic and musculoskeletal diseases (RMDs), using Twitter-based patient-generated health data (PGHD). METHODS: A convenience sample of Twitter messages in English posted by people with RMDs was extracted between 1 March and 12 July 2020 and examined using thematic analysis. Included were Twitter messages that mentioned keywords and hashtags related to both COVID-19 (or SARS-CoV-2) and select RMDs. The RMDs monitored included inflammatory-driven (joint) conditions (ankylosing spondylitis, RA, PsA, lupus/SLE and gout). RESULTS: The analysis included 569 tweets by 375 Twitter users with RMDs across several countries. Eight themes emerged regarding the impact of the COVID-19 pandemic on people with RMDs: (i) lack of understanding of SARS-CoV-2/COVID-19; (ii) critical changes in health behaviour; (iii) challenges in healthcare practice and communication with healthcare professionals; (iv) difficulties with access to medical care; (v) negative impact on physical and mental health, coping strategies; (vi) issues around work participation; (vii) negative effects of the media; and (viii) awareness-raising. CONCLUSION: The findings show that Twitter serves as a real-time data source to understand the impact of the COVID-19 pandemic on people with RMDs. The platform provided 'early signals' of potentially critical health behaviour changes. Future epidemics might benefit from the real-time use of Twitter-based PGHD to identify emerging health needs, facilitate communication and inform clinical practice decisions.