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1.
Intern Med J ; 54(8): 1376-1383, 2024 Aug.
Article in English | MEDLINE | ID: mdl-38816941

ABSTRACT

BACKGROUND: Amid concerns about severe COVID-19 in patients with autoimmune rheumatic disease (AIRD) during the outbreak, it is crucial to explore behavioural changes, whether healthy or unhealthy, arising from this patient population in response to the changing healthcare environment. AIM: To investigate COVID-19-driven behavioural changes in patients with AIRD. METHODS: This observational study invited patients who attended the rheumatology clinic of the Korle Bu Teaching Hospital from 1 August 2020 to 1 July 2021, to respond to a survey questionnaire distributed on the patient's WhatsApp platform. Variables observed were changes in patient behaviour and decision-making related to medication, healthcare service utilisation and clinical advice. RESULTS: Results for 233 patients were analysed in the study, the majority (89.7%) of whom were women. The most significant behavioural changes were a reduction in hydroxychloroquine (HCQ) dosage, adoption of telemedicine for clinical consultation and keen adherence to protective/preventive health measures. Patients also expressed anxiety regarding the risk of contracting COVID-19 (52.5%), infecting their families (66.5%) and losing income (50.2%) due to the pandemic. Women and students were more likely to engage in self-isolation/shielding behaviour. Employed participants practised social distancing more, reduced HCQ dosage and had more fear of losing income. Having mixed connective tissue disease is associated with being anxious about the risk of COVID-19 infection. CONCLUSION: The COVID-19 pandemic has resulted in behaviour changes among patients with AIRD. Despite the perceived risk, most of these patients continue to adhere to their prescribed medication regimens, especially maintaining the dosage of traditional immunosuppressive agents.


Subject(s)
Autoimmune Diseases , COVID-19 , Rheumatic Diseases , Humans , COVID-19/epidemiology , COVID-19/psychology , COVID-19/prevention & control , Female , Male , Rheumatic Diseases/epidemiology , Rheumatic Diseases/drug therapy , Rheumatic Diseases/psychology , Middle Aged , Autoimmune Diseases/epidemiology , Autoimmune Diseases/psychology , Adult , Aged , Surveys and Questionnaires , Hydroxychloroquine/therapeutic use , Telemedicine , Health Behavior , Antirheumatic Agents/therapeutic use , Young Adult , Pandemics
2.
Rheumatol Int ; 44(6): 985-1002, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38609656

ABSTRACT

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.


Subject(s)
Catastrophization , Rheumatic Diseases , Humans , Rheumatic Diseases/psychology , Rheumatic Diseases/epidemiology , Rheumatic Diseases/complications , Prevalence , Catastrophization/psychology
3.
Rheumatol Int ; 44(7): 1233-1244, 2024 Jul.
Article in English | MEDLINE | ID: mdl-38609655

ABSTRACT

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.


Subject(s)
Autoimmune Diseases , Quality of Life , Humans , Autoimmune Diseases/psychology , Cross-Sectional Studies , Rheumatic Diseases/psychology , Self Report , Medication Adherence , Mental Health , Social Determinants of Health , Research Design , Surveys and Questionnaires
4.
Rheumatol Int ; 44(10): 2099-2109, 2024 Oct.
Article in English | MEDLINE | ID: mdl-39154119

ABSTRACT

To demonstrate the burden of sexual dysfunction (SD) among females with rheumatic diseases, we conducted a cross-sectional comparative study in patients with systemic sclerosis (SSc), systemic lupus erythematosus (SLE), and Behçet's syndrome (BS) along with suitable healthy controls (HCs). Age-matched female patients with SSc (n = 50), SLE (n = 49), and BS (n = 54), along with 52 female HCs were included in this study between April and October, 2021. Sociodemographic features were recorded, and psychometric tests, i.e., female sexual function index (FSFI), Beck depression inventory (BDI), body cathexis scale, and marital adjustment test (MAT) were performed. Scale scores were compared, and binary logistic regression was used to identify predictors for SD in the whole group. The total FSFI and body cathexis scores among the patient groups were significantly lower than those of the HCs (p < 0.001). Depression was significantly more frequent in the patient groups. MAT scores did not differ significantly between the study groups. Patients with SSc had the worst scores in each psychometric index, including MAT. Decreased body cathexis score [OR 0.974, 95% CI (0.957-0.991), p = 0.003] and low MAT score [OR 0.937, 95% CI (0.896-0.980), p = 0.005], and being diagnosed with SSc [OR 6.6, 95% CI (1.975-22.498), p = 0.002], SLE [OR 2.7, 95% CI (0.998-7.753), p = 0.050], and BS [OR 2.8, 95% CI (1.100-7.359), p = 0.031], were identified as independent predictors for SD. Body cathexis seems to be the most important independent predictor for SD, and the burden of SD appears heavier in patients with SSc, probably due to poor body image satisfaction.


Subject(s)
Lupus Erythematosus, Systemic , Scleroderma, Systemic , Sexual Dysfunction, Physiological , Humans , Female , Adult , Cross-Sectional Studies , Middle Aged , Sexual Dysfunction, Physiological/etiology , Sexual Dysfunction, Physiological/psychology , Sexual Dysfunction, Physiological/epidemiology , Scleroderma, Systemic/complications , Scleroderma, Systemic/psychology , Lupus Erythematosus, Systemic/psychology , Lupus Erythematosus, Systemic/complications , Depression/psychology , Depression/epidemiology , Depression/etiology , Sexual Dysfunctions, Psychological/psychology , Sexual Dysfunctions, Psychological/etiology , Sexual Dysfunctions, Psychological/epidemiology , Sexual Dysfunctions, Psychological/diagnosis , Rheumatic Diseases/psychology , Rheumatic Diseases/complications , Behcet Syndrome/complications , Behcet Syndrome/psychology , Case-Control Studies , Psychometrics
5.
J Clin Rheumatol ; 30(4): e115-e121, 2024 Jun 01.
Article in English | MEDLINE | ID: mdl-38595276

ABSTRACT

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.


Subject(s)
Quality of Life , Rheumatic Diseases , Humans , Male , Female , Rheumatic Diseases/psychology , Rheumatic Diseases/epidemiology , Cross-Sectional Studies , Middle Aged , Mexico/epidemiology , Adult , Personhood , Aged , Patient Reported Outcome Measures , Psychological Distress , Comorbidity , Severity of Illness Index , Stress, Psychological/epidemiology , Stress, Psychological/psychology
6.
Rheumatol Int ; 42(5): 783-790, 2022 05.
Article in English | MEDLINE | ID: mdl-35359192

ABSTRACT

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.


Subject(s)
COVID-19 , Rheumatic Diseases , COVID-19/epidemiology , Fatigue/epidemiology , Humans , Pain , Pandemics , Quality of Life , Rheumatic Diseases/epidemiology , Rheumatic Diseases/psychology , Surveys and Questionnaires
7.
Ann Rheum Dis ; 80(2): 242-249, 2021 02.
Article in English | MEDLINE | ID: mdl-33055082

ABSTRACT

OBJECTIVES: The Outcome Measures in Rheumatology Initiative established the Contextual Factors Working Group to guide the understanding, identification and handling of contextual factors for clinical trials. In clinical research, different uses of the term 'contextual factors' exist. This study explores the perspectives of researchers (including clinicians) and patients in defining 'contextual factor' and its related terminology, identifying such factors and accounting for them in trials across rheumatology. METHODS: We conducted individual semistructured interviews with researchers (including clinicians) who have experience within the field of contextual factors in clinical trials or other potentially relevant areas, and small focus group interviews with patients with rheumatic conditions. We transcribed the interviews and applied qualitative content analysis. RESULTS: We interviewed 12 researchers and 7 patients. Researcher's and patient's descriptions of contextual factors were categorised into two broad themes, each comprising two contextual factors types. The 'treatment effect' theme focused on factors explaining variations in treatment effects (A) among patients and (B) among studies. The 'outcome measurement' theme focused on factors that explain (C) variations in the measurement result itself (apart from actual changes/differences in the outcome) and (D) variations in the outcome itself (beside treatment of interest). Methods for identifying and handling contextual factors differed among these themes and types. CONCLUSIONS: Two main themes for contextual factors with four types of contextual factors were identified based on input from researchers and patients. This will guide operationalisation of contextual factors. Further research should refine our findings and establish consensus among relevant stakeholders.


Subject(s)
Clinical Trials as Topic/psychology , Research Personnel/psychology , Rheumatologists/psychology , Rheumatology/standards , Terminology as Topic , Consensus , Female , Focus Groups , Humans , Male , Middle Aged , Outcome Assessment, Health Care , Qualitative Research , Research Design , Rheumatic Diseases/psychology
8.
Rheumatology (Oxford) ; 60(12): 5560-5566, 2021 12 01.
Article in English | MEDLINE | ID: mdl-33591311

ABSTRACT

OBJECTIVES: Transition of adolescents with chronic diseases from paediatric healthcare to adult care requires attention to maintain optimal treatment results. We examined changes in health-related quality of life (HRQoL) and disease activity among JIA patients with or without concomitant psychiatric diagnoses after transfer to an adult clinic. METHODS: We prospectively followed 106 consecutive patients who were transferred from the New Children's Hospital to the Helsinki University Hospital Rheumatology outpatient clinic between April 2015 and August 2019 and who had at least one follow-up visit. HRQoL was measured using 15D, a generic instrument. RESULTS: The patients' median age at transfer was 16 years and disease duration 4.0 years. Patients were followed for a median of 1.8 years. Disease activity and overall HRQoL remained stable, but distress (dimension 13 of 15D) increased during follow up (P=0.03). At baseline, patients with at least one psychiatric diagnosis had lower overall 15D scores [mean 0.89 (s.d. 0.14) vs 0.95 (s.d. 0.05), P <0.01] and higher disease activity [DAS28mean 1.88 (s.d. 0.66) vs 1.61 (s.d. 0.31), P = 0.01] than patients without psychiatric diagnoses. The difference in overall 15D persisted over the study period. CONCLUSION: Transition-phase JIA patients with psychiatric diagnoses had lower HRQoL than other JIA patients. Despite reduced disease activity and pain, HRQoL of patients with psychiatric diagnoses remained suboptimal at the end of follow-up. Our results highlight the necessity of comprehensive care and support for transition-phase JIA patients.


Subject(s)
Mental Disorders/complications , Quality of Life , Rheumatic Diseases/complications , Adolescent , Female , Follow-Up Studies , Hospitals, University , Humans , Male , Mental Disorders/diagnosis , Mental Disorders/psychology , Prospective Studies , Rheumatic Diseases/psychology , Young Adult
9.
Rheumatology (Oxford) ; 60(SI): SI68-SI76, 2021 10 09.
Article in English | MEDLINE | ID: mdl-33983432

ABSTRACT

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.


Subject(s)
Autoimmune Diseases/psychology , COVID-19 Vaccines/therapeutic use , COVID-19/prevention & control , Rheumatic Diseases/psychology , Vaccination/psychology , Adult , Aged , Autoimmune Diseases/virology , Cluster Analysis , Female , Global Health/statistics & numerical data , Humans , Intention , Male , Middle Aged , Rheumatic Diseases/virology , SARS-CoV-2
10.
Rheumatology (Oxford) ; 60(SI): SI77-SI84, 2021 10 09.
Article in English | MEDLINE | ID: mdl-33629107

ABSTRACT

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.


Subject(s)
COVID-19/prevention & control , Musculoskeletal Diseases/psychology , Quarantine/psychology , Rheumatic Diseases/psychology , Social Media , Adaptation, Psychological , Communication , Health Behavior , Health Services Accessibility , Humans , SARS-CoV-2
11.
Lupus ; 30(12): 1879-1887, 2021 Oct.
Article in English | MEDLINE | ID: mdl-34459303

ABSTRACT

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.


Subject(s)
COVID-19 , Lupus Erythematosus, Systemic , Mental Health , Rheumatic Diseases , Anxiety/epidemiology , COVID-19/epidemiology , COVID-19/psychology , Depression/epidemiology , Female , Humans , Latin America , Lupus Erythematosus, Systemic/epidemiology , Lupus Erythematosus, Systemic/psychology , Male , Middle Aged , Pandemics , Rheumatic Diseases/epidemiology , Rheumatic Diseases/psychology , Tertiary Care Centers
12.
Rheumatol Int ; 41(2): 329-334, 2021 02.
Article in English | MEDLINE | ID: mdl-33070255

ABSTRACT

To evaluate the public interest in rheumatic diseases during the coronavirus disease 2019 (COVID-19) pandemic. Google Trends was queried to analyze search trends in the United States for numerous rheumatic diseases and also the interest in a rheumatologist. Three 8-week periods in 2020 ((March 15-May 9), (May 10-July 4), and (July 5-August 29)) were compared to similar periods of the prior 4 years (2016-2019). Compared to a similar time period between 2016 and 2019, a significant decrease was found in the relative search volume for more than half of the search terms during the initial March 15-May 9, 2020 period. However, this trend appeared to reverse during the July 5-August 29, 2020 period where the relative volume for nearly half of the search terms were not statistically significant compared to similar periods of the prior 4 years. In addition, this period showed a significant increase in relative volume for the terms: Axial spondyloarthritis, ankylosing spondylitis, psoriatic arthritis, rheumatoid arthritis, Sjögren's syndrome, antiphospholipid syndrome, scleroderma, Kawasaki disease, Anti-Neutrophil Cytoplasmic Antibody (ANCA)-associated vasculitis, and rheumatologist. There was a significant decrease in relative search volume for many rheumatic diseases between March 15 and May 9, 2020 when compared to similar periods during the prior 4 years. However, the trends reversed after the initial period ended. There was an increase in relative search for the term "rheumatologist" between July and August 2020 suggesting the need for rheumatologists during the COVID-19 pandemic. Policymakers and healthcare providers should address the informational demands on rheumatic diseases and needs for rheumatologists by the general public during pandemics like COVID-19.


Subject(s)
Information Seeking Behavior , Internet Use/statistics & numerical data , Rheumatic Diseases/psychology , Rheumatology/statistics & numerical data , COVID-19 , Humans , Pandemics , SARS-CoV-2 , Search Engine
13.
Rheumatol Int ; 41(1): 163-171, 2021 Jan.
Article in English | MEDLINE | ID: mdl-32300866

ABSTRACT

Although patient acceptance is important for biosimilar adoption and reducing healthcare costs, many patients perceive biosimilars to be unsafe and have concerns about switching. Studies show that patients' characteristics influence negative perceptions toward generic drugs, but little research has explored biosimilar acceptance. This study examines which demographic and psychological characteristics are associated with patients' safety perceptions and concerns about switching to biosimilars. Ninety-six patients taking bio-originators for rheumatic conditions (65% for rheumatoid arthritis) completed the Brief Illness Perceptions Questionnaire, Beliefs about Medicines Questionnaire and Perceived Sensitivity to Medicines Scale. Demographic factors, information seeking, concerns about switching and safety perceptions were also assessed. Pearson's correlations and hierarchical linear regressions were conducted to explore whether patient characteristics are associated with perceptions of biosimilars. Negative safety perceptions were associated with being female, short-term bio-originator use, illness beliefs, seeking health information online, high perceived sensitivity to medicines and negative beliefs about medicines. Only being female (ß = 0.24, P = 0.02) was independently associated. More concerns about switching were associated with being female, illness beliefs, high perceived sensitivity to medicines, information-seeking behaviours and preferring innovator drugs. Seeking health information online (ß = 0.20, P = 0.04), preferring innovator drugs (ß = 0.29, P = 0.004) and stronger emotional responses (ß = 0.26, P = 0.01) were independently associated. Perceived bio-originator effectiveness was inversely associated with preferring biosimilars (rs= - 0.33, P < 0.001). Patients who have stronger emotional responses to their condition, are females, seek health information online and prefer innovator drugs that have more negative perceptions about biosimilars. Experiences with bio-originators influence attitudes towards switching.


Subject(s)
Biosimilar Pharmaceuticals/therapeutic use , Drug Substitution/psychology , Health Knowledge, Attitudes, Practice , Rheumatic Diseases/drug therapy , Adult , Aged , Aged, 80 and over , Female , Humans , Male , Middle Aged , Patient Acceptance of Health Care/psychology , Rheumatic Diseases/psychology , Surveys and Questionnaires
14.
Rheumatol Int ; 41(5): 895-902, 2021 05.
Article in English | MEDLINE | ID: mdl-33661331

ABSTRACT

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.


Subject(s)
Autoimmune Diseases/psychology , Influenza Vaccines/administration & dosage , Rheumatic Diseases/psychology , Vaccination Coverage/statistics & numerical data , Adult , Aged , Aged, 80 and over , Autoimmune Diseases/epidemiology , COVID-19/epidemiology , Cross-Sectional Studies , Female , Humans , Influenza, Human/prevention & control , Male , Middle Aged , Pandemics , Patient Compliance/statistics & numerical data , Rheumatic Diseases/epidemiology , SARS-CoV-2 , Young Adult
15.
Rheumatol Int ; 41(9): 1607-1616, 2021 09.
Article in English | MEDLINE | ID: mdl-34244818

ABSTRACT

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.


Subject(s)
Attitude of Health Personnel , COVID-19 Vaccines/administration & dosage , Rheumatology/methods , Vaccination/psychology , COVID-19 , COVID-19 Vaccines/adverse effects , Egypt , Female , Humans , Male , Pandemics , Rheumatic Diseases/drug therapy , Rheumatic Diseases/psychology , SARS-CoV-2 , Surveys and Questionnaires , Universities , Vaccination/statistics & numerical data , Vaccination Refusal/psychology
16.
Rheumatol Int ; 41(3): 575-583, 2021 03.
Article in English | MEDLINE | ID: mdl-33502554

ABSTRACT

This study aimed to evaluate the psychological symptoms of children and adolescents with rheumatological diseases (RD) and their parents during the outbreak. A web-based questionnaire survey was conducted in a cross-sectional design in RD patients and healthy controls. The Hospital Anxiety and Depression Scale was used to evaluate parental psychiatric status; while the State-Trait Anxiety Inventory for Child was used for children. Four hundred and fifty-nine patients with RD and their parents completed the present study, as well as 336 healthy peers. The age and gender of the children were similar across groups. Under 12 years of age, the trait anxiety of the children and the psychological symptoms of parents were similar across groups; while over 13 years of age, anxiety and depression scores of the parents, as well as trait anxiety of the children were higher than the control groups' (7.3 ± 3.4 vs 6.3 ± 3.8, p = 0.006 for parental anxiety; 6.6 ± 3.8 vs. 5.3 ± 3.9, p < 0.001 for parental depression; 36.1 ± 8.7 vs. 33.3 ± 7.9, p = 0.002 for child trait anxiety). In patient group, there were no differences in scale scores according to variables such as rheumatological disease diagnosis, the consulting of doctor for treatment, thinking that RD increases the risk of COVID-19, the history of rheumatic disease attack during the pandemic process, and the use of biological agents. The children's trait anxiety was positively correlated with their parents' anxiety (r = 0.414, p < 0.001) and depression (r = 0.300, p < 0.001) scores. These findings suggest that clinicians should pay attention to the psychiatric symptoms of both children with RD and their parents during the pandemic.


Subject(s)
COVID-19/epidemiology , Parents/psychology , Rheumatic Diseases/psychology , Adolescent , Anxiety/diagnosis , Anxiety/psychology , Case-Control Studies , Child , Cross-Sectional Studies , Depression/diagnosis , Depression/psychology , Female , Humans , Male , Pandemics , Psychiatric Status Rating Scales , Rheumatic Diseases/epidemiology , SARS-CoV-2 , Surveys and Questionnaires
17.
Rheumatol Int ; 41(6): 1105-1114, 2021 06.
Article in English | MEDLINE | ID: mdl-33779780

ABSTRACT

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.


Subject(s)
COVID-19 Vaccines/administration & dosage , COVID-19/psychology , Patient Acceptance of Health Care/statistics & numerical data , Adult , COVID-19/epidemiology , COVID-19/prevention & control , Case-Control Studies , Cross-Sectional Studies , Female , Health Knowledge, Attitudes, Practice , Health Personnel/psychology , Health Personnel/statistics & numerical data , Humans , Male , Middle Aged , Pandemics , Patient Acceptance of Health Care/psychology , Rheumatic Diseases/epidemiology , Rheumatic Diseases/psychology , SARS-CoV-2 , Surveys and Questionnaires , Turkey/epidemiology , Vaccination/psychology
18.
Rheumatol Int ; 41(9): 1601-1605, 2021 09.
Article in English | MEDLINE | ID: mdl-34213580

ABSTRACT

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.


Subject(s)
COVID-19 Vaccines/administration & dosage , Health Knowledge, Attitudes, Practice , Rheumatic Diseases/psychology , Vaccination/psychology , Adult , COVID-19/prevention & control , COVID-19/psychology , COVID-19 Vaccines/adverse effects , COVID-19 Vaccines/immunology , Case-Control Studies , Female , Humans , India , Male , Middle Aged , Pandemics , Rheumatic Diseases/immunology , SARS-CoV-2 , Surveys and Questionnaires , Vaccination/statistics & numerical data , Vaccination Refusal/psychology
19.
J Clin Rheumatol ; 27(3): 120-126, 2021 Apr 01.
Article in English | MEDLINE | ID: mdl-33264246

ABSTRACT

OBJECTIVE: The aim of this study was to assess patients' perceived risk of contracting SARS-CoV-2 at the peak of the pandemic in NYC in terms of their systemic rheumatic disease and medications. METHODS: With the approval of their rheumatologists, patients were interviewed by telephone and were asked about their perceived risk of contracting SARS-CoV-2 considering their rheumatic condition and whether medications increased this risk. Patients also completed surveys assessing beliefs about medication and multidimensions of physical/mental well-being. Information about current medications and rheumatologist-initiated changes in medications during the pandemic were reported by patients and verified from medical records. RESULTS: One hundred twelve patients (86% women; mean age, 50 years; 81% White, 15% Latino) with diverse diagnoses were enrolled. Fifty-four percent thought they were at "very much greater risk" of COVID-19 because of their rheumatic condition, and 57% thought medications "definitely" put them at greater risk. In multivariable analysis, the perception of "very much greater risk" was associated with greater belief that rheumatic disease medications were necessary, worse physical function, chronic pulmonary comorbidity, and more anxiety. In a separate model, the perception that medications "definitely" caused greater risk was associated with White race, not taking hydroxychloroquine, rheumatologists initiating change in medications, more anxiety, and taking biologics and corticosteroids. CONCLUSIONS: Patients' perceived increased risk of contracting SARS-CoV-2 was associated with beliefs about their rheumatic disease, medications, comorbidity, and anxiety. Clinicians should be aware of patients' perceptions and foster self-management practices that will alleviate anxiety, minimize exposure to the virus, and optimize systemic rheumatic disease outcomes.


Subject(s)
COVID-19/etiology , Rheumatic Diseases/complications , Rheumatic Diseases/psychology , Self Concept , Adaptation, Psychological , Adult , Aged , Aged, 80 and over , Anxiety , COVID-19/psychology , Female , Health Status , Humans , Male , Middle Aged , New York City , Rheumatic Diseases/drug therapy , Risk Assessment , Surveys and Questionnaires , Young Adult
20.
Rheumatol Int ; 40(8): 1229-1238, 2020 08.
Article in English | MEDLINE | ID: mdl-32572609

ABSTRACT

We hypothesized that patients with rheumatic diseases (RD) would have increased psychological distress during the COVID-19 outbreak; therefore, assessed their psychological symptoms and changes in their routine. A web-based questionnaire survey was conducted in a cross-sectional design in three groups of participants: (1.) patients with RD, (2.) hospital workers, and (3.) high-school teachers/academic staff. Psychiatric status was evaluated using Hospital Anxiety and Depression Scale and Impact of Event Scale-Revised scale. Overall response rate was 34.7%. We studied 771 patients with RD, 535 hospital workers, and 917 teachers/academic staff. Most of the patients with RD were unwilling to go to the hospital (86%), while 22% discontinued their medications. Biological DMARDS were the most frequent drugs whose doses were altered. Only 4% were willing to take hydroxychloroquine for protection. Moreover, the frequency of anxiety (20%), depression (43%), and post-traumatic stress (28%) among patients with RD were found to be comparable to that found among the teachers/academic staff (23%, 43% and 29%, respectively), whereas significantly less than that observed among the hospital workers (40%, 62%, and 46%, respectively) (p < 0.001). Female gender, use of social media, having a comorbid disease, or a psychiatric disorder were found to be independently associated with psychiatric symptoms in total study population. The majority of the patients were unwilling to attend outpatient visits and one-fifth skipped or stopped their immunosuppressive agents. Psychiatric symptoms in patient's and teacher's populations were of considerable clinical concern, despite being significantly lower than that observed among the hospital workers.


Subject(s)
Betacoronavirus , Coronavirus Infections/epidemiology , Pneumonia, Viral/epidemiology , Rheumatic Diseases/psychology , Adolescent , Adult , Aged , Aged, 80 and over , COVID-19 , Cross-Sectional Studies , Disease Outbreaks , Female , Humans , Male , Middle Aged , Pandemics , Rheumatic Diseases/drug therapy , SARS-CoV-2 , Turkey/epidemiology , Young Adult
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