«Living with rheumatoid arthritis¼ in an indigenous qom population in Argentina. A qualitative study.

INTRODUCTION: Rheumatoid arthritis (RA) is a chronic disease which impacts patients' quality of life. The prevalence of RA in the qom population was 2.4% and represented an aggressive and disabling disease. The study goal was to describe the experience of the indigenous qom community individual suffering from RA, along with their experience with the local health care system in the city of Rosario, Santa Fe, Argentina. METHODS: Qualitative Study using techniques of participant observation and semi-structured interviews; following a guideline developed by a multidisciplinary research group comprising anthropologists, rheumatologists, nurses, and psychologists. A triangulation strategy was implemented for the analysis. RESULTS: A total of 33 interviews were conducted in 29 individuals with RA. The results showed a "normalization" of their symptoms and of their limitations in performing daily tasks. The individuals' relationship with the local health care system was complex and limited in several aspects (e.g. access to health care, continuity of treatment, complexity of medical care pathway and lack of cultural competence). CONCLUSIONS: RA is a disease that has a negative impact on the daily lives of the qom people living in Rosario. Improving the relationship between this population and the local health care system as well as the implementation of multidisciplinary work should be priorities.

«Vivir con artritis reumatoide» en una población indígena qom en la Argentina. Un estudio cualitativo / «Living with Rheumatoid Arthritis» in an Indigenous Qom Population in Argentina. A Qualitative Study

Introducción: La artritis reumatoide (AR) es una enfermedad crónica que impacta la vida de los pacientes. La prevalencia de AR en la población qom fue de 2,4% y representó una enfermedad agresiva y limitante. El objetivo del estudio fue describir la experiencia de los individuos de la comunidad indígena qom que sufrían de AR y su experiencia con el sistema de salud local en la ciudad de Rosario, Santa Fe, Argentina. Materiales y métodos: Estudio cualitativo, de corte etnográfico, utilizando técnicas de observación de los participantes y entrevistas semiestructuradas; siguiendo una guía desarrollada por un grupo multidisciplinario de antropólogos, reumatólogos, enfermeras y psicólogos. Se realizó un análisis temático basado en las narrativas reconstruidas y una estrategia de triangulación entre investigadores. Resultados: Se realizaron 33 entrevistas a 29 individuos con AR. Los resultados mostraron una «normalización» de los síntomas y de sus limitaciones al realizar tareas diarias. La relación entre los individuos y el sistema de salud local fue complejo y limitado en diferentes aspectos (p. ej., acceso al sistema de salud, continuidad del tratamiento, complejidad en las vías de acceso a la asistencia médica y falta de competencia cultural). Conclusiones: La AR es una enfermedad que tiene un impacto negativo en la vida diaria de la población qom que vive en Rosario. Mejorar la relación entre esta población y el sistema de salud, así como implementar un trabajo multidisciplinario debe ser una prioridad.(AU)

Introduction: Rheumatoid arthritis (RA) is a chronic disease which impacts patients’ quality of life. The prevalence of RA in the qom population was 2.4% and represented an aggressive and disabling disease. The study goal was to describe the experience of the indigenous qom community individual suffering from RA, along with their experience with the local health care system in the city of Rosario, Santa Fe, Argentina. Methods: Qualitative Study using techniques of participant observation and semi-structured interviews; following a guideline developed by a multidisciplinary research group comprising anthropologists, rheumatologists, nurses, and psychologists. A triangulation strategy was implemented for the analysis. Results: A total of 33 interviews were conducted in 29 individuals with RA. The results showed a «normalization» of their symptoms and of their limitations in performing daily tasks. The individual relationships with the local health care system was complex and limited in several aspects (e.g. access to health care, continuity of treatment, complexity of medical care pathway and lack of cultural competence). Conclusions: RA is a disease that has a negative impact on the daily lives of the qom people living in Rosario. Improving the relationship between this population and the local health care system as well as the implementation of multidisciplinary work should be priorities.(AU)

Prevalence of musculoskeletal disorders and rheumatic diseases in an Argentinean indigenous Wichi community.

OBJECTIVE: To estimate the prevalence of musculoskeletal disorders (MSK) and rheumatic diseases in an indigenous Wichi population in Argentina. METHODS: This is a cross-sectional, community-based study using the Community-Oriented Program for the Control of Rheumatic Diseases (COPCORD) methodology in ≥ 18-year-old subjects. Validated surveys were conducted by trained interviewers. Subjects with MSK pain (positive cases) were evaluated by internists and rheumatologists for diagnosis and treatment. RESULTS: A total of 648 interviews were performed (90.4% of the census population). Mean age was 37.5 years (SD 14.8), and 379 (58.5%) were female. The mean years of education was 7.0 (SD 3.7); 552 subjects (85.2%) were covered by the public health care system. A total of 216 (33.3%) subjects had MSK pain in the last 7 days. Rheumatic disease prevalence was as follows: mechanical back pain (19.0%), rheumatic regional pain syndrome (5.2%), osteoarthritis (3.2%), rheumatoid arthritis (RA) (3.2%), inflammatory back pain (1.2%), undifferentiated arthritis (0.3%), Sjögren syndrome (0.15%), and fibromyalgia (0.15%). RA patients included 19 (90.5%) women and 9 (42.9%) with RA family history. One hundred percent were seropositive and 66.7% showed radiologic erosions. The mean of Disease Activity Score [DAS-28 (ESR)] at the time of diagnosis was 5.1 (SD 1.5) and the Health Assessment Questionnaire Disability Index (HAQ-DI) was 0.8 (SD 0.4). CONCLUSION: RA prevalence was 3.2%, one of the highest reported using the COPCORD methodology in indigenous and non-indigenous peoples in Latin America, with a high percentage of family cases. Pain and functional capacity were the variables allowing patients' early referral to a specialist. Key Points • The RA prevalence was 3.2%, one of the highest reported using COPCORD methodology in indigenous and non-indigenous peoples in Latin America. • The patients with RA had high percentage of familiar history of RA. • The pain and functional capacity were the variables associated with a diagnosis of any rheumatic disease and should be considered for early referral. • The mean of the delay in the diagnosis was 5.8 years. In this community, the lack of the "migration health" phenomenon may be a social determinant that negatively impacts their health.

«Living with Rheumatoid Arthritis¼ in an Indigenous Qom Population in Argentina. A Qualitative Study. / «Vivir con artritis reumatoide¼ en una población indígena qom en la Argentina. Un estudio cualitativo.

INTRODUCTION: Rheumatoid arthritis (RA) is a chronic disease which impacts patients' quality of life. The prevalence of RA in the qom population was 2.4% and represented an aggressive and disabling disease. The study goal was to describe the experience of the indigenous qom community individual suffering from RA, along with their experience with the local health care system in the city of Rosario, Santa Fe, Argentina. METHODS: Qualitative Study using techniques of participant observation and semi-structured interviews; following a guideline developed by a multidisciplinary research group comprising anthropologists, rheumatologists, nurses, and psychologists. A triangulation strategy was implemented for the analysis. RESULTS: A total of 33 interviews were conducted in 29 individuals with RA. The results showed a «normalization¼ of their symptoms and of their limitations in performing daily tasks. The individual relationships with the local health care system was complex and limited in several aspects (e.g. access to health care, continuity of treatment, complexity of medical care pathway and lack of cultural competence). CONCLUSIONS: RA is a disease that has a negative impact on the daily lives of the qom people living in Rosario. Improving the relationship between this population and the local health care system as well as the implementation of multidisciplinary work should be priorities.

Rheumatoid arthritis in the indigenous qom population of Rosario, Argentina: aggressive and disabling disease with inadequate adherence to treatment in a community-based cohort study.

To describe the baseline and follow up epidemiological/clinical characteristics of rheumatoid arthritis (RA) in a community-based cohort of the qom population. RA (ACR criteria) patients identified (n = 40) or not (n = 25) in the previous study were included. Baseline and follow-up visits (3, 6, and 12 months) were performed. Treatment adherence and modification, disability (Health Assessment Questionnaire Disability Index-HAQ-DI), and Disease Activity [DAS-28 (ESR)] were ascertained. At 12 months, complete and incomplete lost to follow-up patients were identified. The estimated RA prevalence was 3%. The patients' mean (SD) disease duration was 110.5 (17.9) and their median delay in diagnosis 30.4 (IQR 52.8) months; mean (SD) age and years of formal education were 39.8 (1.6) and 5.3 (SD 0.3); 58 (89.2%) were female, and 89.2% were seropositive. At baseline, their mean DAS-28 (ESR) was 4.8 (SD 0.9) with 67.7% having high disease activity and 32.3% moderate; 76.9% reported HAQ-DI ≥ 0.8. At 12 months, three patients have died; 13 (20.9%) were "completely" and 19 (30.6%) "incompletely" lost to follow-up. There were favorable changes over time for disease activity (p Ë‚ 0.001), HAQ-DI (p Ë‚ 0.001), and treatment modifications (p Ë‚ 0.001) but no changes in treatment adherence (p = 0.260). The main cause of lost to follow-up was migration. This population has one of the highest RA prevalence rate reported. Patients had an aggressive and disabling disease, with poor adherence to treatment. Improvements of clinical parameters over time were observed.

Prevalence of musculoskeletal disorders and rheumatic diseases in the indigenous Qom population of Rosario, Argentina.

This study aimed to estimate the prevalence of musculoskeletal disorders and rheumatic diseases among the indigenous Qom (Toba) population in the city of Rosario, Santa Fe, Argentina. An analytical cross-sectional study using methodology of the Community Oriented Program for the Control of Rheumatic Diseases (COPCORD) was performed. Subjects ≥18 years of age were interviewed by advanced students of medicine and nursing, bilingual translator-facilitators, and coordinators. Individuals with musculoskeletal pain (positive cases) were evaluated sequentially for 7 days by internists and rheumatologists for diagnosis and treatment. The study included 1656 individuals (77 % of the census population). Of these, 1020 (61.5 %) were female, with mean age of 35.3 (SD 13.9) years, and 1028 (62.0 %) were bilingual. The public health care system covers 87.1 % of the population. Musculoskeletal pain in the previous 7 days and/or at some time during their life was present in 890 subjects (53.7 %). Of those with pain in the last 7 days, 302 (64.1 %) subjects had an Health Assessment Questionnaire Disability Index (HAQ-DI) score ≥0.8. The most frequent pain sites were lumbar spine (19.3 %), knees (13.0 %), and hands (12.0 %). The prevalence of rheumatic diseases was as follows: mechanical back pain (20.1 %), rheumatic regional pain syndrome (2.9 %), osteoarthritis (4.0 %) rheumatoid arthritis (2.4 %), inflammatory back pain (0.2 %), systemic sclerosis (0.1 %), Sjögren syndrome (0.1 %), fibromyalgia (0.1 %), mixed connective tissue disease (0.06 %), and systemic lupus erythematosus (0.06 %). The prevalence of musculoskeletal disorders was 53.7 % and rheumatic diseases 29.6 %. Rheumatoid arthritis prevalence was 2.4 % using COPCORD methodology, one of the highest reported at present.

Prevalence of rheumatic regional pain syndromes in Latin-American indigenous groups: a census study based on COPCORD methodology and syndrome-specific diagnostic criteria.

This study assessed the overall and specific prevalence of the main rheumatic regional pain syndromes (RRPS) in four Latin-American indigenous groups. A Community Oriented Program for Control of Rheumatic Diseases (COPCORD) methodology-based census study was performed in 4240 adults (participation rate: 78.88 %) in four indigenous groups: Chontal (Oaxaca, Mexico, n = 124), Mixteco (Oaxaca, Mexico; n = 937), Maya-Yucateco (Yucatán, Mexico; n = 1523), and Qom (Rosario, Argentina; n = 1656). Subjects with musculoskeletal pain were identified using a cross-cultural, validated COPCORD questionnaire administered by bilingual personnel, and reviewed by general practitioners or rheumatologists using standardized case definitions for the 12 most frequent RRPS. The overall prevalence of RRPS was confirmed in 239 cases (5.64 %, 95 % CI: 4.98-6.37). The prevalence in each group was Chontal n = 19 (15.32 %, 95 % CI: 10.03-22.69); Maya-Yucateco n = 165 (10.83 %, 95 % CI: 9.37-12.49); Qom n = 48 (2.90 %, 95 % CI: 2.19-3.82); and Mixteco n = 7 (0.75 %, 95 % CI: 0.36-1.53). In the whole sample, the syndrome-specific prevalence was rotator cuff tendinopathy: 1.98 % (95 % CI: 1.60-2.45); lateral epicondylalgia: 0.83 % (95 % CI: 0.59-1.15); medial epicondylalgia: 0.73 % (95 % CI: 0.52-1.04); biceps tendinopathy: 0.71 % (95 % CI: 0.50-1.01); anserine syndrome: 0.64 % (95 % CI: 0.44-0.92); inferior heel pain: 0.61 % (95 % CI: 0.42-0.90); trochanteric syndrome: 0.49 % (95 % CI: 0.25-0.64); de Quervain's tendinopathy: 0.45 % (95 % CI: 0.29-0.70); trigger finger: 0.42 % (95 % CI: 0.27-0.67); carpal tunnel syndrome: 0.28 % (95 % CI: 0.16-0.49); Achilles tendinopathy (insertional): 0.12 % (95 % CI: 0.05-0.28); and Achilles tendinopathy (non-insertional): 0.07 % (95 % CI: 0.02-0.21). Leaving aside the comparison between Maya-Yucateco and Chontal groups (p = 0.18), we found significant differences (p < 0.001) in overall RRPS prevalence between the remaining pairs of indigenous groups. Syndrome-specific prevalences were also different between groups. Our findings support the hypothesis that overall RRPS prevalence and syndrome-specific prevalences are modulated by population-specific factors.

Access to an optimal treatment. Current situation.

Access to an optimal treatment is determined by several factors, like availability, pricing/funding, and acceptability. In Latin America (LA), one of the regions with more disparities particularly on healthcare in the world, access is affected by other factors, including socio-demographic factors like poverty, living in rural regions, and/or health coverage. Regarding rheumatoid arthritis (RA), an inadequate access to specialists leads to diagnosis and treatment delays diminishing the probability of remission or control. Unfortunately, in almost every LA country, there are cities with more than 100,000 inhabitants without rheumatologists; furthermore, a primary care reference system is present in only about half the countries. In the public health system, coverage of biologic disease-modifying antirheumatic drugs occurs for less than 10 % of the patients in about half of the countries. Also, as healthcare providers based their funding decisions mainly in direct costs instead of on patient-centered healthcare quality indicators, access to new drugs is more complicated in this region than in high-income countries. More accurate epidemiological data from LA need to be obtained in order to improve the management of patients with rheumatic diseases in general and RA in particular.