Pilgrimage in pediatric palliative care: The journey of caregivers.

Admission of terminally ill patients into pediatric palliative care remains a challenge in Mexico and Latin America, despite the multiple benefits of early transfer. In this context the trajectories in search of health care of patients and caregivers have not been documented. Therefore, the objective of this study was to describe and analyze the experiences of primary caregivers and family members of pediatric patients in the palliative care unit of a Children's Hospital in Mexico, between October 19, 2019, and January 19, 2022. We used the framework of health pilgrimage, which comprises the transformative search of healing for patients, focusing on health barriers and the necessary displacement in search of care. With information obtained through interviews, we reconstructed the pilgrimages in search of health care navigating the Mexican healthcare system. Furthermore, we describe the experience of the primary caregiver accompanying the sick child during their journey to palliative care. We recount the adverse factors associated with this pilgrimage, such as the emotional and socioeconomic impact on primary and secondary caregivers.

Interrupción del embarazo en nefritis lúpica: un análisis bioético desde el método integral / Termination of pregnancy in lupus nephritis: A bioethical analysis with the integrative method

Antecedentes y objetivo: La interrupción del embarazo en pacientes con enfermedades reumatológicas es controvertida y pocas veces se realiza un análisis bioético. En este estudio analizamos el caso de una paciente embarazada con nefritis lúpica sin respuesta a tratamiento a quien se le planteó la interrupción del embarazo. Métodos: Se aplicó el modelo integral, incluyendo distintos sistemas normativos para el análisis del dilema. Resultados: Desde el utilitarismo es justificable la interrupción del embarazo, buscando el mayor beneficio para la mayoría de las partes. La deontología justifica tanto continuar como interrumpir el embarazo, centrando la importancia en la acción misma y en la autonomía. Para la ética de la virtud, la importancia de las decisiones recae en la persona que realiza la acción buscando el florecimiento: la interrupción del embarazo sería justificable. Discusión y conclusiones: La interrupción del embarazo sería una solución adecuada según el modelo integral. El análisis bioético de casos paradigmáticos es fundamental para asegurar el mejor actuar posible en casos similares en reumatología.(AU)

Background and objective: Termination of pregnancy in patients with rheumatic diseases is controversial and a bioethical analysis is rarely performed. In this study we analysed the case of a pregnant patient with lupus nephritis unresponsive to treatment, for whom termination of pregnancy is considered. Methods: The integrative model was applied combining different normative ethical theories. Results: From a utilitarian perspective, termination of pregnancy is justifiable, seeking the greatest benefit for the greatest number of stakeholders. Deontology justifies both terminating and continuing the pregnancy, focusing on the action itself and on autonomy. In virtue ethics the importance of decisions rests with the person who performs the action seeking flourishing; termination of pregnancy would be justifiable. Discussion and conclusions: Interruption of pregnancy is a justifiable solution following the integrative model. Bioethical analysis of paradigmatic cases is essential to ensure the best possible action and as a precedent for future similar situations in rheumatology.(AU)

Termination of pregnancy in lupus nephritis: A bioethical analysis with the integrative method.

BACKGROUND AND OBJECTIVE: Termination of pregnancy in patients with rheumatic diseases is controversial and a bioethical analysis is rarely performed. In this study we analysed the case of a pregnant patient with lupus nephritis unresponsive to treatment, for whom termination of pregnancy is considered. METHODS: The integrative model was applied combining different normative ethical theories. RESULTS: From a utilitarian perspective, termination of pregnancy is justifiable, seeking the greatest benefit for the greatest number of stakeholders. Deontology justifies both terminating and continuing the pregnancy, focusing on the action itself and on autonomy. In virtue ethics the importance of decisions rests with the person who performs the action seeking flourishing; termination of pregnancy would be justifiable. DISCUSSION AND CONCLUSIONS: Interruption of pregnancy is a justifiable solution following the integrative model. Bioethical analysis of paradigmatic cases is essential to ensure the best possible action and as a precedent for future similar situations in rheumatology.

Vulnerability in women primary caregivers of children in palliative care due to intimate partner violence in a pediatric hospital in Mexico.

BACKGROUND: Women are the primary caregivers of children in palliative care. Research has shown that the presence of intimate partner violence at home exacerbates the vulnerability of the caregiver. Current statistics indicate a high prevalence of violence in Mexico present in the intersectionality between intimate partner violence and the role of the primary caregiver. This study aimed to describe the frequency of intimate partner violence among primary palliative caregivers at the Hospital Infantil de México Federico Gómez. METHODS: We conducted a cross-sectional and prospective study with convenience sampling; no sample calculation was performed. All female primary caregivers of children in the palliative care unit were invited to participate. The Scale of Violence and Index of Severity of Violence was used as the measuring instrument. RESULTS: One hundred women participated in the study by submitting their survey in a designated mailbox. No sociodemographic data or patient diagnoses were collected. The frequency of intimate partner violence was 28%, of which 16% were considered severe cases. Women reported psychological violence (36%), sexual violence (23%), and physical violence (22%). CONCLUSIONS: Almost one-third of female primary caregivers of pediatric patients at the Hospital Infantil de México Federico Gómez have been victims of some form of violence by current partners. This study highlights a previously unreported problem and opens the door for studies to correlate intimate partner violence among primary caregivers and the quality of life of children in palliative care.

INTRODUCCIÓN: Las mujeres son las principales cuidadoras de los niños en cuidados paliativos. Las investigaciones han demostrado que la violencia de pareja en el hogar exacerba la vulnerabilidad del cuidador. Las estadísticas actuales sobre violencia en México indican una alta prevalencia presente en la interseccionalidad entre la violencia de pareja y el rol de cuidador principal. El objetivo de este estudio fue describir la frecuencia de violencia de pareja entre los cuidadores primarios del Hospital Infantil de México Federico Gómez (HIMFG). MÉTODOS: Se llevó a cabo un estudio transversal y prospectivo con muestreo por conveniencia; no se realizó ningún cálculo de muestra. Se invitó a participar a todas las mujeres cuidadoras primarias de niños en la Unidad de Cuidados Paliativos. Se utilizó como instrumento la Escala de Violencia e Índice de Severidad de la Violencia. RESULTADOS: Cien mujeres participaron en el estudio; no se recogieron sus datos sociodemográficos ni diagnósticos. La frecuencia de violencia de pareja fue del 28%: 16% se consideraron casos graves. Las mujeres reportaron violencia psicológica (36%), violencia sexual (23%) y violencia física (22%). CONCLUSIONES: Alrededor de la tercera parte de las mujeres cuidadoras principales de pacientes pediátricos del HIMFG han sido víctimas de algún tipo de violencia por parte de sus parejas actuales. Este estudio destaca un problema no informado previamente y abre la puerta a estudios para correlacionar la violencia de pareja íntima entre los cuidadores primarios y la calidad de vida de los niños en cuidados paliativos.

Vulnerability in women primary caregivers of children in palliative care due to intimate partner violence in a pediatric hospital in Mexico / Vulnerabilidad en mujeres cuidadoras primarias de menores en cuidados paliativos debida a violencia de pareja en un hospital de niños en México

Abstract Background: Women are the primary caregivers of children in palliative care. Research has shown that the presence of intimate partner violence at home exacerbates the vulnerability of the caregiver. Current statistics indicate a high prevalence of violence in Mexico present in the intersectionality between intimate partner violence and the role of the primary caregiver. This study aimed to describe the frequency of intimate partner violence among primary palliative caregivers at the Hospital Infantil de México Federico Gómez. Methods: We conducted a cross-sectional and prospective study with convenience sampling; no sample calculation was performed. All female primary caregivers of children in the palliative care unit were invited to participate. The Scale of Violence and Index of Severity of Violence was used as the measuring instrument. Results: One hundred women participated in the study by submitting their survey in a designated mailbox. No sociodemographic data or patient diagnoses were collected. The frequency of intimate partner violence was 28%, of which 16% were considered severe cases. Women reported psychological violence (36%), sexual violence (23%), and physical violence (22%). Conclusions: Almost one-third of female primary caregivers of pediatric patients at the Hospital Infantil de México Federico Gómez have been victims of some form of violence by current partners. This study highlights a previously unreported problem and opens the door for studies to correlate intimate partner violence among primary caregivers and the quality of life of children in palliative care.

Resumen Introducción: Las mujeres son las principales cuidadoras de los niños en cuidados paliativos. Las investigaciones han demostrado que la violencia de pareja en el hogar exacerba la vulnerabilidad del cuidador. Las estadísticas actuales sobre violencia en México indican una alta prevalencia presente en la interseccionalidad entre la violencia de pareja y el rol de cuidador principal. El objetivo de este estudio fue describir la frecuencia de violencia de pareja entre los cuidadores primarios del Hospital Infantil de México Federico Gómez (HIMFG). Métodos: Se llevó a cabo un estudio transversal y prospectivo con muestreo por conveniencia; no se realizó ningún cálculo de muestra. Se invitó a participar a todas las mujeres cuidadoras primarias de niños en la Unidad de Cuidados Paliativos. Se utilizó como instrumento la Escala de Violencia e Índice de Severidad de la Violencia. Resultados: Cien mujeres participaron en el estudio; no se recogieron sus datos sociodemográficos ni diagnósticos. La frecuencia de violencia de pareja fue del 28%: 16% se consideraron casos graves. Las mujeres reportaron violencia psicológica (36%), violencia sexual (23%) y violencia física (22%). Conclusiones: Alrededor de la tercera parte de las mujeres cuidadoras principales de pacientes pediátricos del HIMFG han sido víctimas de algún tipo de violencia por parte de sus parejas actuales. Este estudio destaca un problema no informado previamente y abre la puerta a estudios para correlacionar la violencia de pareja íntima entre los cuidadores primarios y la calidad de vida de los niños en cuidados paliativos.

Co-design of a Community-based Rehabilitation Program to Decrease Musculoskeletal Disabilities in a Mayan-Yucateco Municipality.

BACKGROUND: Chronic musculoskeletal (MSK) diseases are an important cause of disability in the Mayan community of Chankom in Yucatán, Mexico. OBJECTIVE: To understand a community-based participatory research (CBPR) strategy implemented in Chankom to design a community-based rehabilitation (CBR) program for people living with MSK diseases. METHODS: Qualitative descriptive thematic analysis from an ethnographic work conducted in Chankom, during the implementation of a CBPR strategy from 2014 to 2017. RESULTS: Four main themes describe the main processes that formed our CBPR strategy: 1) forming and maintaining an alliance between academic and community members, 2) prioritizing community needs, 3) integrating local and global knowledge and 4) shared-decision-making. This CBPR strategy allowed the design of a CBR program formed by six main interventions: 1) health services coordination, 2) personal support, 3) community venous blood sampling services, 4) community specialized services, 5) health promotion, and 6) health transportation services. CONCLUSIONS: Co-designing a CBR program for people living with chronic MSK diseases in Chankom was possible through an extensive community engagement work structured around four main processes, including the essential principles of CBPR. The designed CBR program includes culturally sensitive interventions aimed at improving the quality, availability, accessibility, and acceptability of health care services. Moreover, the program mainly addressed the "health" component of the World Health Organization-CBR matrix, suggesting a need for a new CBPR cycle after it is implemented and evaluated in the future.

Diagnostic Delay in Autoimmune Rheumatic Diseases: A Global Health Problem.

In this issue of The Journal of Rheumatology, Xiang et al1 describe the experience and influencing factors of symptom appraisal and help-seeking among patients with various autoimmune rheumatic diseases (ARDs) in a multiethnic urban Asian population.The authors guided the interpretation of this qualitative study based on the social cognitive theory framework to enhance the appraisal of symptoms and help-seeking.

Gender representation in rheumatology journals: an assessment of editors, editorial boards, and authors.

Diversity is widely recognized as a driver of excellence and innovation. In recent years, women have become an increasingly significant part of the rheumatology workforce. We aimed to assess the gender representation of the leading rheumatology journals' editors and to explore whether editors' gender correlates with the gender of the first and last authors of published articles. We conducted a cross-sectional study and extracted editorial members of rheumatology journals in quartiles 1 to 3 (Clarivate Analytics) from each journal's website. We categorized editorial positions according to the level of influence in manuscript acceptance decision-making (levels I to III). The gender of editors and of the first and last authors in all 2019 original articles published in a sample of 15 rheumatology journals was assigned using a combination of digital gallery and manual searches. There were 2242 editors' names retrieved from 43 journals, 24 (26%) of the 94 editors at level I, 139 (36%) of 385 editors at level II, and 469 (27%) of 1763 at level III were female. The imbalance between journals was heterogeneous. Females were the first authors in 1342 (48%) and the last authors in 969 (35%) of the 2797 published articles. However, we found no significant correlation between editors' and authors' gender. Our data showed uneven gender representation on the editorial boards of most rheumatology journals, but we did not find any apparent vertical segregation or influence on publishing by gender. Our findings suggest that a generational transition may be occurring among authors.

Construction and validation of a reproductive behavior questionnaire for female patients with rheumatic diseases.

INTRODUCTION/OBJECTIVES: Active autoimmune rheumatic diseases (ARDs) before conception increase the risk of flares and adverse pregnancy outcomes. We aimed to construct and validate a reproductive behavior questionnaire in Spanish for patients with ARDs to assess their knowledge and their reproductive behavior. METHOD: We constructed and validated a reproductive behavior questionnaire in two phases: (1) a literature review followed by interviews of reproductive-age female patients, and (2) a cross-sectional study to complete validation. Convenience sampling was carried out with 165 female patients: 65 participated in the cross-cultural adaptation phase and 100 in the validation phase. The internal consistency was evaluated by estimating Cronbach's alpha and tetrachoric correlation coefficients. Values ≥ 0.40 were considered acceptable (p < 0.05). RESULTS: The initial instrument included 38 questions. Thematic analysis identified 8 important dimensions or topics, which were combined to create the Rheuma Reproductive Behavior interview questionnaire. A final total of 41 items across 10 dimensions were obtained. The test-retest analysis showed perfect correlations in 34 of the 41 items, moderate in 6 items, and negative in one of the items. The mean age of the patients was 35.65 years (SD 9.02), and the mean time to answer the survey was 13.66 min (SD 7.1). CONCLUSIONS: The Rheuma Reproductive Behavior questionnaire showed good reliability and consistency capturing patients' reproductive health knowledge and reproductive behavior. Key Points • We designed and validated a questionnaire to assess reproductive health knowledge and reproductive behavior among female patients with ARDs. • The questionnaire was comprehensible for participants, and showed good reliability and consistency capturing reproductive knowledge and behavior. • This tool may aid in the design of strategies to improve reproductive decision-making for female patients with ARDs.

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.

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.

Clinical Diagnosis of Chikungunya Infection: An Essential Aid in a Primary Care Setting Where Serological Confirmation Is Not Available.

BACKGROUND: Chikungunya virus (CHIKV) diagnosis has become a challenge for primary care physicians in areas where the Zika virus and/or Dengue virus are present. Case definitions for the three arboviral infections overlap. METHODS: A cross-sectional analysis was carried out. A bivariate analysis was made using confirmed CHIKV infection as the outcome. Variables with significant statistical association were included in an agreement consensus. Agreed variables were analyzed in a multiple regression model. The area under the receiver operating characteristic (ROC) curve was calculated to determine a cut-off value and performance. RESULTS: 295 patients with confirmed CHIKV infection were included. A screening tool was created using symmetric arthritis (4 points), fatigue (3 points), rash (2 points), and ankle joint pain (1 point). The ROC curve identified a cut-off value, and a score ≥ 5.5 was considered positive for identifying CHIKV patients with a sensibility of 64.4% and a specificity of 87.4%, positive predictive value of 85.5%, negative predictive value of 67.7%, area under the curve of 0.72, and an accuracy of 75%. CONCLUSION: We developed a screening tool for CHIKV diagnosis using only clinical symptoms as well as proposed an algorithm to aid the primary care physician.

Novel Application of the World Health Organization Community-Based Rehabilitation Matrix to Understand Services' Contributions to Community Participation for Persons With Traumatic Spinal Cord Injury: A Mixed-Methods Study.

PURPOSE: The aim of the study is to use the World Health Organization community-based rehabilitation matrix for understanding services' contributions to foster community participation for people with traumatic spinal cord injury. METHODS: This study used a convergent mixed-methods design with a quantitative arm describing the frequency with which services contributed to 22 of the community-based rehabilitation-matrix elements and a qualitative arm involving document reviews and stakeholder interviews. Results were integrated following Onwuegbuzie and Teddlie's method (i.e., quan + QUAL). RESULTS: Twenty of the 22 (91%) of the World Health Organization community-based rehabilitation elements were addressed by traumatic spinal cord injury services. Five types of services were identified. Integrated results showed that the strengths of traumatic spinal cord injury services were as follows: (1) comprehensiveness; (2) essential medical services publicly funded; (3) numerous social protections available; and (4) highly active community-based organizations. Identified opportunities to improve these services were as follows: (1) increase specificity for traumatic spinal cord injury and (2) increase communication and integration among services. CONCLUSIONS: Services available for people with traumatic spinal cord injury in the province studied address most of the elements of the World Health Organization community-based rehabilitation matrix. However, lack of cohesion between services could create gaps that hinder community participation. Addressing these gaps could improve the quality of life and outcomes of people with traumatic spinal cord injury.

Inequity and vulnerability in Latin American Indigenous and non-Indigenous populations with rheumatic diseases: a syndemic approach.

Syndemics are a framework that documents health inequities and vulnerabilities in populations with rheumatic diseases. Compared with other approaches, syndemics are able to conjunctly consider epidemiological, biological, sociodemographic and economic factors, and their interactions. OBJECTIVE: To estimate health inequity and vulnerability among Indigenous and non-Indigenous populations with rheumatic and musculoskeletal diseases (RMD) in Latin America using the syndemic approach. DESIGN: This is a secondary analysis of a previously published large-scale study on the prevalence of RMD. SETTING: Studies carried out in five Latin American countries (Argentina, Colombia, Ecuador, Mexico and Venezuela). Health inequity and vulnerability in RMD were identified through a syndemic approach using network and cluster analysis. PARTICIPANTS: A total of 44 560 individuals were studied: 29.78% self-identified as Indigenous, 60.92% were female, the mean age was 43.25 years. Twenty clusters were identified in the Indigenous population and 17 in the non-Indigenous population. RESULTS: The variables associated with RMD among Indigenous populations were rurality, public health system, high joint biomechanical stress, greater pain, disability and alcoholism; and among non-Indigenous people they were being a woman, urban origin, older age, private health system, joint biomechanical stress, greater pain and disability. We identified different health inequities among patients with RMD (ie, lower educational attainment, more comorbidities), associated with factors such as Indigenous self-identification and rural residence. CONCLUSIONS: A syndemic approach enables us to identify health inequities in RMD, as shown by higher prevalence of comorbidities, disability and socioeconomic factors like lower educational attainment. These inequities exist for the overall population of patients with RMD, although it is more evident in Indigenous groups with added layers of vulnerability.

Cultural adaptation and validation of the COPCORD questionnaire for the detection of rheumatic diseases in the indigenous Misak population

Introduction: The objective was to adapt and valídate in a culturally sensitive way the methodology of the community-oriented programme for the control of rheumatic diseases (COPCORD) in the indigenous Misak community of Colombia. Material and methods: A culturally sensitive validation of the COPCORD questionnaire in Spanish was carried out, translating into the nam trik wam language used by the Misak community of Guambia town. It was adapted to the context of this population and later a back-translation to Spanish was carried out. Finally, it was validated applying the survey with the support of bilingual translators. Participants with pain, stiffness or swelling in any joint in the previous 7 days and/or at any time in life were evaluated by physicians and physiotherapists and were then, upon confirming the diagnosis of a musculoskeletal disorder, subsequently examined by a rheumatologist. Results: In this population (n = 106), 58.5% were women with an average age of 45.5 years. In the last 7 days, 51 subjects (48.1%) reported having musculoskeletal pain and 7 (44.3%) reported pain at some time in their life. Of those who received treatment, 53.1% reported using traditional medicine, 34.4% homeopathic treatment, and 25% allopathic treatment. The COPCORD Misak demonstrated an adequate capacity to detect musculoskeletal disorders, with a sensitivity of 63.3% and a specificity of 80.3%, with a positive likelihood ratio of 3.2, and area under the curve of.71. Conclusion: The COPCORD methodology is a valid screening tool to detect musculoskeletal disorders in the Misak community.

Introducción: El objetivo fue adaptar y validar, de forma culturalmente sensible, la metodología del Programa orientado a la comunidad para el control de enfermedades reumáticas (COPCORD) en la comunidad indígena misak de Colombia. Material y métodos: Se realizó una validación culturalmente sensible del cuestionario Copcord en español, que se tradujo al nam trik wam, lengua usada por el pueblo misak del resguardo de Guambia. El cuestionario se adecuó al contexto de esta población y posteriormente se llevó a cabo una retrotraducción al español. Por último, se validó aplicando la encuesta con el apoyo de traductores bilingües. Los participantes con dolor, rigidez o hinchazón en cualquier articulación en los siete días previos, o en cualquier momento de la vida, fueron evaluados por médicos y fisioterapeutas. Al confirmarse el diagnóstico de una enfermedad musculoesquelética los participantes eran examinados por un reumatólogo. Resultados: De la población estudiada (n = 106) el 58,5% fueron mujeres, con una edad promedio de 45,4 arios. En los últimos siete días, 51 sujetos (48,1%) informaron tener dolor musculoesquelético y siete (44,3%) refirieron dolor en algún momento de su vida. Quienes recibieron tratamiento reportaron el uso de medicamentos tradicionales en un 53,1% de los casos, homeopáticos en el 34,4% y alopáticos en el 25%. El cuestionario COPCORD Misak demostró una adecuada capacidad para detectar los trastornos musculoesqueléticos, con una sensibilidad del 63,3%, una especificidad del 80,3%, una razón de verosimilitud positiva de 3,2 y un área bajo la curva de 0,71. Conclusión: La metodología COPCORD es una herramienta válida de cribado de enfermedades musculoesqueléticas en el pueblo misak.

Digital Narratives of Living With Lupus: Lived Experiences and Meanings for Latin American and Latino Patients and Their Families.

OBJECTIVE: Systemic lupus erythematosus (SLE) disproportionately affects Latin American and Latino populations, with worse outcomes compared to nonminority populations. Understanding patients' views is critical to provide culturally competent care. The objective of this research is to analyze lived experiences with SLE from comments made by Latin American and Latino patients, and their relatives and friends, on the public Facebook group "Hablemos de Lupus" (in English: "Let's Talk about Lupus"). METHODS: Deidentified narratives posted as a reaction to the most popular resources shared by the page were extracted using the Facepager application. We conducted a thematic analysis under an interpretative medical anthropology framework. RESULTS: Five core themes were demonstrated by social media comments: lived experiences with lupus, religious/spiritual thoughts, metaphors, heredity, and experiences of family and friends. Being diagnosed with lupus is perceived as a life-changing event. The fluctuating course of the disease causes uncertainty, and the perception of invisibility within the patient's social circle generates feelings of being misunderstood. Faith and spiritual thoughts are coping strategies. Patients use metaphors about the disease's meaning and their lived experiences (the purple butterfly, not belonging, bellicose metaphors) to communicate with others. Relatives and friends are impacted by their loved one's distress. CONCLUSION: Patients perceive lupus as an unpredictable illness and use metaphors to foster empathy and communicate their experiences to others. Religion is as important as medical treatment to cope with the disease, and the experience of having lupus extends to family and friends. Findings can be used to improve physician-patient communication and lupus education campaigns in the Latin American and Latino population.

A Mixed-Methods Systematic Review on Syndemics in Rheumatology.

OBJECTIVE: We aimed to assess the use of framework and corresponding methodology to document syndemics and its impact in rheumatic and musculoskeletal diseases (RMDs). METHODS: Using a mixed-methods systematic review, studies using the syndemic framework approach for RMDs were identified and published from January 2003 to January 2021. The Joanna Briggs Institute, Cochrane Collaboration, and PRISMA guidelines were followed to search, retrieve, revise, and analyze. RESULTS: A total of 658 potential articles were identified, but only 10 were initially eligible. After a full-text review, 4 were included. Following a full-text review, 2 quantitative, 1 qualitative, and 1 mixed-methods study were included. In the first, network analysis found that RMDs were associated with comorbidities, unhealthy habits, low educational level, living in rural areas, socioeconomic conditions, and health inequality in indigenous communities. In the second, SSEM and cluster analysis demonstrated an association between low back pain and factors, such as comorbidities and indigenous status, among others, in urban/rural communities. The qualitative study examined 3 fishing family generations and reported less syndemic vulnerability. The mixed-methods study focused on osteoarthritis with multimorbidities in African American population, where lack of education added to worsening outcomes. CONCLUSIONS: Even though the insights syndemic studies have given to other areas, its use in rheumatology is scarce. The complexity of the clinical and social determinants related to RMDs makes it necessary to conduct further studies from a syndemic perspective.

Molecular survey of Zika virus in the animal-human interface in traditional farming.

Backyard animal husbandry is common in rural communities in developing countries and, given the conditions in which it occurs, it can increase the risk of disease transmission, such as arboviruses. To determine the presence of the Zika virus (ZIKV) and abundance of its arthropod vectors we evaluated the socioeconomic implications involved in its transmission in two highly vulnerable Mayan communities in the state of Yucatan that practice backyard farming. An analytical cross-sectional study was carried out throughout 2016 to understand socioeconomic variables and seasonal patterns in mosquito populations. We selected 20 households from each community. Social exclusion indicators were analyzed, human and domestic animals were sampled, and mosquitoes were collected and identified. Four out of eight indicators of social exclusion were higher than the reported national averages. We captured 5,825 mosquitoes from 16 species being Culex quinquefasciatus and Aedes aegypti the most abundant. The presence of chickens and human overcrowding in dwellings were the most significant factors (P = 0.026) associated with the presence of Ae. aegypti. Septic tanks (odds ratio = 6.64) and chickens (odds ratio = 27.41) in backyards were the main risk factors associated with the presence of immature states of Ae. aegypti in both communities. Molecular analysis to detect ZIKV was performed in blood samples from 416 humans, 1,068 backyard animals and 381 mosquito pools. Eighteen humans and 10 pig pools tested positive for ZIKV. Forty-three mosquito pools tested positive for flavivirus. Ten of the 43 pools of positive mosquitoes were sequenced, corresponding 3/10 to ZIKV and 1/10 to Dengue virus type 2. The findings obtained indicate the continuous circulation of Flavivirus (including ZIKV) in backyard environments in vulnerable communities, highlighting the importance of studying their transmission and maintenance in these systems, due that backyard animal husbandry is a common practice in these vulnerable communities with limited access to health services.

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.