Sociocultural and moral narratives influencing the decision to vaccinate among rheumatic disease patients: a qualitative study.

INTRODUCTION/OBJECTIVES: Vaccination is a process that involves individual, social, and ethical aspects, beyond public governance of vaccines or vaccination as a public health concern. The aim of this study is to describe the sociocultural and moral narratives that influence the decision to vaccinate in general and to vaccinate against COVID-19 specifically, among patients at the rheumatology units of two hospitals. METHODS: Qualitative study involving individual semi-structured interviews following an interview guide. We conducted a thematic analysis using the ATLAS.ti software, with further triangulation to verify concordance and aid in the interpretation of the data from a medical anthropology framework and using a narrative ethics approach to gain insight into the participants' underlying moral values. RESULTS: We interviewed 37 patients in total, along with 3 rheumatologists. Five core themes emerged from the analysis to understand the decision to vaccinate: (1) information about vaccines and disease, (2) perceived risk-benefit of vaccination, (3) the physician-patient relationship, (4) governance of vaccination programs, (5) attitudes towards vaccines. Individual and family experiences with vaccination are diverse depending on the type of vaccine. The COVID-19 vaccine, as a new medical technology, is met with more controversy leading to hesitancy. CONCLUSIONS: The decision to vaccinate among Mexican rheumatic disease patients can sometimes involve doubt and distrust, especially for those with a lupus diagnosis, but ultimately there is acceptance in most cases. Though patients make and value autonomous decisions, there is a collective process involving sociocultural and ethical aspects. Key points • The complexity of vaccine decision-making is better identified through a narrative, qualitative approach like the one used in this study, as opposed to solely quantitative approaches • Sociocultural and moral perspectives of vaccination shape decision-making and, therefore, highlight the importance of including patients in the development of effective clinical practice guidelines as well as ethically justified public policy • Sociohistorical context and personal experiences of immunization influence vaccine decision-making much more than access to biomedical information about vaccines, showing that approaches based on the information deficit model are inadequate to fight vaccine hesitancy.

The COVID-19 epidemic curve and vaccine acceptance among patients with rheumatic diseases: an ecological study.

The attitudes toward emerging COVID-19 vaccines have been of great interest worldwide, especially among vulnerable populations such as patients with rheumatic and musculoskeletal diseases (RMDs). The aim of this study was to analyze the relationship between the nationwide number of COVID-19 cases and deaths, and vaccine acceptance or hesitancy of patients with RMDs from four patient care centers in Mexico. Furthermore, we explored differences in acceptance according to specific diagnoses: rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE). This ecological study was a secondary analysis of a cross-sectional study using a validated questionnaire to measure vaccine acceptance. We generated a global Likert scale to evaluate overall attitudes toward the COVID-19 vaccine. We analyzed data from 1336 patients from March to September 2021: 85.13% (1169) were women, with a mean age of 47.87 (SD 14.14) years. The most frequent diagnoses were RA (42.85%, 559) and SLE (27.08%, 393). 635(47.52%) patients were unvaccinated, 253(18.93%) had one dose and 478(35.77%) had two doses. Of all participating patients, 94% were accepting toward the COVID-19 vaccine. Vaccine acceptance remained consistently high throughout the study. However, differences in vaccine acceptance are identified when comparing diagnoses. The peak of the national epidemic curve coincided with an increase in hesitancy among patients with RA. Contrastingly, patients with SLE became more accepting as the epidemic curve peaked. Mexican patients show high acceptance of the COVID-19 vaccine, influenced in part by a patient's specific diagnosis. Furthermore, vaccine acceptance increased mirroring the curve of COVID-19 cases and deaths in the country. This should be taken into consideration when updating recommendations for clinical practice.

Social networks as education strategies for indigenous patients with rheumatoid arthritis during COVID-19 pandemic. Are they useful?

INTRODUCTION: The use of online education strategies has been introduced as a tool to support health care in patients with rheumatic disease. However, it is important to consider the patient's sociocultural environment. OBJECTIVE: To design and assessment of bilingual audiovisual material acceptability, by means of two social networks, for patients with rheumatoid arthritis (RA) in the qom community in Argentina. METHODS: A qualitative study was performed in two stages: (1) audiovisual material design, development, and validation implementing a collaborative action research method. (2) Publishing of the material on two social networks at two different times. The selected topic was the coronavirus disease 2019 impact on patients with RA. A qualitative and quantitative data analysis was performed. RESULTS: Forty subjects participated into the initial validation stage with a 70% acceptance rate. First, 28 subjects (70%) participated on Facebook and 25 (62.5%) joined the WhatsApp group. Then, the same number of subjects participated on Facebook, while only 45% of subjects participated on WhatsApp. Most of them participated using short phrases such as "I like it." The 60% of the participants played the videos. However, less than 10% shared them. Videos in Spanish were the once most shared. Participation dramatically fell during the second time, and 40% of the WhatsApp subjects never participated. CONCLUSION: The strategies developed for this indigenous community were of no utility, probably because of socio-cultural, economic, and digital barriers. They should be designed and implemented identifying the target group and its environment. Key Points • Online education strategies should be designed with cultural sensitivity. • Technological barriers make digital inequality visible in vulnerable groups. • Educational interventions should have a collaborative design and they should be created together with the communities. • The COVID-19 pandemic has deepened inequalities in the health care and follow-up of patients with rheumatic diseases, especially between most socially and economically disadvantaged groups.

Perception of risk and impact of the COVID-19 pandemic on patients with rheumatic diseases: a case-control study.

OBJECTIVES: Risk perception of the COVID-19 pandemic may affect chronic disease outcomes among patients with rheumatic diseases (RD). To describe and compare the perception of risk and effects of the COVID-19 pandemic on patients with RD from two health care centers compared with a control group. METHODS: A retrospective case-control study was conducted. Patient respondents completed an online survey to measure risk perception and effects of the COVID-19 pandemic. The case group consisted of patients with a confirmed diagnosis of RD, coming from two third-level health care centers. The control group was a population group without RD from a public university. RESULTS: A total of 3944 participants were included: 986 patients with an RD (cases) from the two hospital centers and 2958 controls without RD. A greater perception of risk severity and perception of contagion was observed in the group of patients with RD, OR: 1.70, 95% CI 1.44‒2.01 and OR: 2.0, 95% CI 1.79‒2.23, respectively; more significant deterioration in family life OR: 1.14, 95% CI 1.01‒1.29; greater economic impact, OR 3.94, 95% CI 3.48‒4.46; as well as negative emotions and feelings (alarmed, anxiety, depression, confusion, fear, isolation, and discrimination). This impact was maintained when the model was adjusted for comorbidities. CONCLUSION: In the face of an unexpected and catastrophic event such as the COVID-19 pandemic, patients with RD report apparently greater impact on their mental state and economic situation than the control population, as well as increased perception of discrimination. Key Points • The multidisciplinary analyses of risk perception are required to promote actions that can enhance the preparedness and responses of public efforts for possible future pandemics in a way that considers the specific needs of vulnerable people like patients with rheumatic diseases. • Identifying risk perceptions of possible effects of the pandemic, sources of communication, and opinions is essential to ensure self-care in rheumatic disease. • The impact of COVID-19 has been much greater for people with rheumatic disease, especially in terms of the perceived severity of the pandemic, impacts on family and economy, preventive behaviors, and uncertainty.

Factors associated to COVID-19 vaccine acceptance in Mexican patients with rheumatic diseases: A cross-sectional and multicenter study.

COVID-19 vaccination is recommended in patients with rheumatic diseases (RDs) to prevent hospitalized COVID-19 and worse outcomes. However, patients' willingness to receive a SARS-CoV-2 vaccine and the associated factors vary across populations, vaccines, and time. The objective was to identify factors associated with COVID-19 vaccine acceptance (VA) in Mexican outpatients with RDs. This multicenter study was performed between March 1 and September 30, 2021, and four national centers contributed with patients. Participants filled out a questionnaire, which included 32 items related to patients' perception of the patient-doctor relationship, the COVID-19 vaccine component, the pandemic severity, the RD-related disability, comorbid conditions control, immunosuppressive treatment impact on the immune system, and moral/civil position of COVID-19 vaccine. Sociodemographic, disease-related, and treatment-related variables and previous influenza record vaccination were also obtained. Multiple logistic regression analyses identified factors associated with VA, which was defined based on a questionnaire validated in our population. There were 1439 patients whose data were analyzed, and the most frequent diagnoses were Rheumatoid Arthritis in 577 patients (40.1%) and Systemic Lupus Erythematosus in 427 (29.7%). Patients were primarily middle-aged women (1235 [85.8%]), with (mean±SD) 12.1 (±4.4) years of formal education. Years of education, corticosteroid use, patient perceptions about the vaccine and the pandemic severity, patient civil/moral position regarding COVID-19 vaccine, and previous influenza vaccination were associated with VA. In Mexican patients with RDs, COVID-19 VA is associated with individual social-demographic and disease-related factors, patient´s perceptions, and previous record vaccination. This information is crucial for tailoring effective vaccine messaging in Mexican patients with RDs.

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.

COVID-19 vaccine hesitancy among Mexican outpatients with rheumatic diseases.

Vaccine hesitancy (VH) has emerged as a recognized threaten to contain the COVID-19 pandemic. Historically, low vaccine acceptance rates had been described among patients with rheumatic diseases (RMDs). The study objective was to determine COVID-19 VH among Mexican outpatients with RMDs and validate the COVID-19 VH questionnaire. This cross-sectional study was developed in three steps. Step 1 consisted of translation/cultural adaptation of the Oxford-COVID-19-VH questionnaire. Step 2 consisted of pilot testing and questionnaire feasibility, content, construct and criterion validity, reliability (internal consistency and temporal stability) and questionnaire sensitivity to change. Step 3 consisted of VH phenomenon quantification in patients from two metropolitan tertiary-care-level centers. Step 1 followed ISPOR-task-force recommendations. Patients who participated in step 2 (n = 50 for pilot testing/feasibility and n = 208 for questionnaire validation [91 in test-retest and 70 in questionnaire-sensitivity to change]) and step 3 (n = 600) were representative outpatients with RMDs. The seven-item COVID-19 VH questionnaire was found feasible, valid (experts' agreement ≥80%; a 1-factor structure accounted for 60.73% of the total variance; rho = 0.156, p = .025 between COVID-19 VH questionnaire and score from the Spanish version of the Vaccine Hesitancy Scale; and lower questionnaire scores in patients who reported 5 years-previous influenza vaccination), reliable (Cronbach's ɑ = 0.889, intra-class correlation coefficient = 0.933 and 95% confidence interval = 0.898-0.956) and sensitive to change (effect size = 1.17 and 0.86, respectively, in patients who decreased [n = 34] and increased [n = 31] questionnaire-score after intervention). VH phenomenon was 35.5%. VH phenomenon was present in a substantial number of Mexican patients with RMDs. The COVID-19 VH questionnaire showed good psychometric properties to assess COVID-19 VH in our population.

Gout during the SARS-CoV-2 pandemic: increased flares, urate levels and functional improvement.

INTRODUCTION: Gout is the most common inflammatory arthritis, but was not considered in most COVID-19 and rheumatic diseases reports. Our aim was to describe changes in clinical data, treatment, function and quality of life for gout patients during COVID-19 pandemic. METHODS: Prospective, descriptive and analytical study of 101 consecutive gout (ACR/EULAR 2015) patients from our clinic evaluated during pandemic by phone call (n=52) or phone call + face-to-face (n=68) that accepted to participate. Variables are demographics, clinical and treatment data, HAQ, EQ5D questionnaires and COVID-19-related data. Patients were divided in two groups: flare (n=36) or intercritical gout (n=65) also; available pre-pandemic data was obtained from 71 patients. Statistical analyses are X2, paired t-test and Wilcoxon test. RESULTS: Included gout patients were males (95.8%), mean (SD) age 54.7 (10.7) years and disease duration 16.4 (9.8) years; 90% received allopurinol, 50% colchicine as prophylaxis and 25% suspended ≥ 1 medication. Comparison of pre-pandemic vs pandemic data showed > flares (4.4% vs 36%, p=0.01), more flares in the last 6 months: 0.31 (0.75) vs 1.71 (3.1), (p=0.004 and > urate levels: 5.6 (1.7)vs 6.7 (2.2) mg/dL, p=0.016. Unexpectedly, function and quality-of-life scores improved: HAQ score 0.65 (2.16) vs 0.12 (0.17), p= 0.001. Seven patients were COVID-19-confirmed cases; they had significantly more flares, higher urate levels and lower allopurinol doses and two died. CONCLUSIONS: In gout patients, flares were 9 times more frequent during pandemic also, they had increased urate levels but led to an unexpected improvement in HAQ and functionality scores. Resilience and lifestyle changes in gout during COVID-19 pandemic require further studies. Key Points • COVID-19 pandemic is associated with 4 times more flares in gout patients. • Increased flares were also seen in previously well-controlled gout patients. • Increased serum urate levels were also found in gout patients during pandemic. • In our gout clinic, 8/101 patients were diagnosed as COVID-19+, and two of them died.

Heterogeneity of COVID-19 Risk Perception: A Socio-Mathematical Model.

The perception of risk has been a key element in the experiences, containment and differential impact of the COVID-19 pandemic worldwide. The complexity of this phenomenon requires the interdisciplinary integration of theoretical and methodological aspects, as this integration informs the objective of developing a mathematical proposal based on a conceptual model located within the social theory of risk at the micro-social level. The mathematical risk model used here was developed from a secondary analysis of a study of 12,649 individuals on the experiences of the COVID-19 pandemic in a population in which the quantity and quality of the information made it possible to define a risk factor and its relationship to emotions and the sources of information used. Four sequential strategies were used to construct the model: choosing the variables for the questionnaire that theoretically corresponded to the conceptual model, constructing the risk vector and initial grouping of individuals by perception of risk, modeling by using principal component analysis and applying network methods. The theoretical model of risk, proposed and constructed through the analysis of groupings by quartiles and by networks in the studied population from a social and mathematical perspective, demonstrates the heterogeneity of risk perception as manifested by differences in perception by age, gender, expression of feelings and media consulted in a university community. The knowledge and methodology generated in these analyses contribute to the body of knowledge informing the response to future epidemiological contingencies.

Comparison between Covid-19 and influenza A(H1N1) pandemic experiences and risk perception in Mexican university.

OBJECTIVE: To compare the perceptions and experiences between the A(H1N1) and Covid-19 pandemics in a univer-sity population. MATERIALS AND METHODS: Online surveys were administered during the influenza A(H1N1) -originated in Mexico in 2009- and Covid-19 epidemics. MEASURES: so-ciodemographic characteristics, knowledge, information and communication, perception of risk, physical and mental health, effects on daily life, and preventive behaviors. RESULTS: This study included 24 998 respondents, 51.36% from the A(H1N1) group and 48.63% from the Covid-19 group. Differences were observed in the perception of severity. During the influenza A(H1N1) pandemic worry was the feeling reported most frequently, while for Covid-19 it was anxiety. Covid-19 had greater impact on students' family economy and caused a higher uncertainty. CONCLUSIONS: The perceptions and ex-periences of the two pandemics were similar but the impact has been much greater for Covid-19, especially in terms of the severity, family economy, preventive behaviors, and uncertainty.

Clinical and bioethical implications of health care interruption during the COVID-19 pandemic: A cross-sectional study in outpatients with rheumatic diseases.

BACKGROUND: To determine the impact of health care interruption (HCI), on clinical status of the patients reincorporated to an outpatient clinic for rheumatic diseases (OCDIR), from a tertiary care level center who was temporally switched to a dedicated COVID-19 hospital, and to provide a bioethical analysis. METHODS: From March to June 2020, the OCDIR was closed; since June, it is limited to evaluate 25% of the ongoing outpatients. This cross-sectional study surveyed 670 consecutive rheumatic outpatients between June 24th and October 31th, concomitant to the assessment of the rheumatic disease clinical status by the attendant rheumatologist, according to disease activity level, clinical deterioration and adequate/inadequate control. Multiple logistic regression analysis identified factors associated to HCI and to clinical deterioration. RESULTS: Patients were middle-aged females (86.7%), with median disease duration of 10 years, comorbidity (38.5%) and 138 patients (20.6%) had discontinued treatment. Primary diagnoses were SLE and RA, in 285 (42.5%) and 223 (33.3%) patients, respectively. There were 344 patients (51.3%) with HCI. Non-RA diagnosis (OR: 2.21, 95%CI: 1.5-3.13), comorbidity (OR: 1.7, 95%CI: 1.22-2.37), patient's need for rheumatic care during HCI (OR: 3.2, 95%CI: 2.06-4.97) and adequate control of the rheumatic disease (OR: 0.64, 95%CI: 0.45-0.9) were independently associated to HCI. There were 160 patients (23.8%) with clinical deterioration and associated factors were disease duration, substantial disease activity previous HCI, patients need for rheumatic care and treatment discontinuation. CONCLUSIONS: HCI during COVID-19 pandemic impacted course of rheumatic diseases and need to be considered in the bioethical analysis of virus containment measures.

Syndemics & syndemogenesis in COVID-19 and rheumatic and musculoskeletal diseases: old challenges, new era.

People with rheumatic and musculoskeletal diseases (RMDs) are facing several challenges during the COVID-19 pandemic, such as poor access to regular health services and drug shortages, particularly in developing countries. COVID-19 represents a syndemic, synergistic condition that interacts with and exacerbates pre-existing diseases such as RMDs, other co-morbidities and social conditions. The emerging evidence on both biological and non-biological factors implicated in worse outcomes in people with RMDs affected by the COVID-19 pandemic, whether infected by the virus or not, calls for the need to use more novel and holistic frameworks for studying disease. In this context, the use of a syndemic framework becomes particularly relevant. We appeal for a focus on the identification of barriers and facilitators to optimal care of RMDs in the context of the COVID-19 pandemic, in order to tackle both the pandemic itself and the health inequities inherent to it.