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OBJECTIVE: Psoriatic arthritis (PsA) is chronic disease that compromises multiple domains and might be associated with progressive joint damage, increased mortality, functional limitation, and considerably impaired quality of life. Our objective was to generate evidence-based recommendations on the management of PsA in Pan American League of Associations for Rheumatology (PANLAR) countries. METHODS: We used the Grading of Recommendations, Assessment, Development, and Evaluation (GRADE)-ADOLOPMENT approach to adapt the 2019 recommendations of the European Alliance of Associations for Rheumatology. A working group consisting of rheumatologists from various countries in Latin America identified relevant topics for the treatment of PsA in the region. The methodology team updated the evidence and synthesized the information used to generate the final recommendations. These were then discussed and defined by a panel of 31 rheumatologists from 15 countries. RESULTS: Theses guidelines report 15 recommendations addressing therapeutic targets, use of antiinflammatory agents and corticosteroids, treatment with disease-modifying antirheumatic drugs (conventional synthetic, biologic, and targeted synthetic), therapeutic failure, optimization of biologic therapy, nonpharmacological interventions, assessment tools, and follow-up of patients with PsA. CONCLUSION: Here we present a set of recommendations to guide decision making in the treatment of PsA in Latin America, based on the best evidence available, considering resources, medical expertise, and the patient's values and preferences. The successful implementation of these recommendations should be based on clinical practice conditions, healthcare settings in each country, and a tailored evaluation of patients.
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Antirreumáticos , Artrite Psoriásica , Reumatologia , Artrite Psoriásica/tratamento farmacológico , Artrite Psoriásica/terapia , Humanos , Antirreumáticos/uso terapêutico , Reumatologia/normas , Sociedades Médicas , América Latina , Medicina Baseada em Evidências , Qualidade de Vida , Anti-Inflamatórios/uso terapêutico , Corticosteroides/uso terapêuticoRESUMO
Close and frequent follow-up of heart failure (HF) patients improves clinical outcomes. Mobile telemonitoring applications are advantageous alternatives due to their wide availability, portability, low cost, computing power, and interconnectivity. This study aims to evaluate the impact of telemonitoring apps on mortality, hospitalization, and quality of life (QoL) in HF patients. We conducted a registered (PROSPERO CRD42022299516) systematic review of randomized clinical trials (RCTs) evaluating mobile-based telemonitoring strategies in patients with HF, published between January 2000 and December 2021 in 4 databases (PubMed, EMBASE, BVSalud/LILACS, Cochrane Reviews). We assessed the risk of bias using the RoB2 tool. The outcome of interest was the effect on mortality, hospitalization risk, and/or QoL. We performed meta-analysis when appropriate; heterogeneity and risk of publication bias were evaluated. Otherwise, descriptive analyses are offered. We screened 900 references and 19 RCTs were included for review. The risk of bias for mortality and hospitalization was mostly low, whereas for QoL was high. We observed a reduced risk of hospitalization due to HF with the use of mobile-based telemonitoring strategies (RR 0.77 [0.67; 0.89]; I2 7%). Non-statistically significant reduction in mortality risk was observed. The impact on QoL was variable between studies, with different scores and reporting measures used, thus limiting data pooling. The use of mobile-based telemonitoring strategies in patients with HF reduces risk of hospitalization due to HF. As smartphones and wirelessly connected devices are increasingly available, further research on this topic is warranted, particularly in the foundational therapy.
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Insuficiência Cardíaca , Telemedicina , Humanos , Doença Crônica , Terapia por Exercício , Insuficiência Cardíaca/terapia , Hospitalização , Qualidade de VidaRESUMO
BACKGROUND: Systemic lupus erythematosus (SLE) is a chronic, systemic, autoimmune disease of multifactorial origin. There are no previous studies in Colombia describing juvenile SLE (jSLE) prevalence, prompting this demographic description. OBJECTIVE: This study aimed for prevalence calculation and epidemiologic analysis of jSLE) in Colombian patients, ages 0-19, from 2015 to 2019. METHODS: This descriptive, cross-sectional study searched the Colombian Ministry of Health database for codes of the International Classification of Diseases, 10th revision (ICD-10) associated with jSLE to estimate the disease prevalence for the total population and for specific age groups at national and regional levels. Calculations used intercensal estimates of population based on the projections of the national statistics administrative department (DANE) from the most recent census. This paper presents a sociodemographic analysis of patients with jSLE. RESULTS: The study identified in Colombia, from 2015 to 2019, 3680 cases with jSLE as the principal diagnosis. Calculated prevalence of jSLE was 25 cases per 100,000 population, with highest frequency in ages 15-19 and females (84%), with a female:male ratio of 5.1:1. CONCLUSION: Estimated prevalence of jSLE in Colombia is at the highest limit of worldwide findings. Consistent with reports in the literature, the disease involves females more frequently than males.
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Lúpus Eritematoso Sistêmico , Humanos , Masculino , Feminino , Lúpus Eritematoso Sistêmico/complicações , Colômbia/epidemiologia , Prevalência , Estudos Transversais , Dados de Saúde Coletados RotineiramenteRESUMO
ABSTRACT: Telemedicine is the delivery of health care services by health care professionals using information and communication technologies to exchange valid information for the diagnosis, treatment, and prevention of diseases. Telemedicine was further developed in Latin America during the COVID-19 (coronavirus disease 2019) pandemic, becoming the first line of defense for health professionals to stop the spread of infections and allow them to continue the care of their patients. During the pandemic, 79% of rheumatologists in Latin America reported the use of remote communication, the most frequent being the use of phone calls and WhatsApp voice messages. In contrast, 84% of the patients reported that telemedicine was appropriate for them during the pandemic, but only 54% considered telemedicine to be a valid option for rheumatic health care after the pandemic. Telemedicine and telehealth have advantages such as lower costs, improved access in rural areas, shortage of care providers, and reduction in waiting time for appointments. However, it also has some challenges, such as legal, technological, and organizational barriers. In this review, we explore the current state of telemedicine in Latin America and discuss its future.
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COVID-19 , Reumatologia , Telemedicina , Humanos , América Latina/epidemiologia , SARS-CoV-2RESUMO
OBJECTIVE: To develop the first evidence-based Pan American League of Associations for Rheumatology (PANLAR) guidelines for the treatment of Takayasu arteritis (TAK). METHODS: A panel of vasculitis experts developed a series of clinically meaningful questions addressing the treatment of TAK patients in the PICO (population/intervention/comparator/outcome) format. A systematic literature review was performed by a team of methodologists. The evidence quality was assessed according to the GRADE (Grading of Recommendations/Assessment/Development/Evaluation) methodology. The panel of vasculitis experts voted each PICO question and made recommendations, which required ≥70% agreement among the voting members. RESULTS: Eleven recommendations were developed. Oral glucocorticoids are conditionally recommended for newly diagnosed and relapsing TAK patients. The addition of nontargeted synthetic immunosuppressants (e.g., methotrexate, leflunomide, azathioprine, or mycophenolate mofetil) is recommended for patients with newly diagnosed or relapsing disease that is not organ- or life-threatening. For organ- or life-threatening disease, we conditionally recommend tumor necrosis factor inhibitors (e.g., infliximab or adalimumab) or tocilizumab with consideration for short courses of cyclophosphamide as an alternative in case of restricted access to biologics. For patients relapsing despite nontargeted synthetic immunosuppressants, we conditionally recommend to switch from one nontargeted synthetic immunosuppressant to another or to add tumor necrosis factor inhibitors or tocilizumab. We conditionally recommend low-dose aspirin for patients with involvement of cranial or coronary arteries to prevent ischemic complications. We strongly recommend performing surgical vascular interventions during periods of remission whenever possible. CONCLUSION: The first PANLAR treatment guidelines for TAK provide evidence-based guidance for the treatment of TAK patients in Latin American countries.
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Reumatologia , Arterite de Takayasu , Humanos , Estados Unidos , Arterite de Takayasu/diagnóstico , Arterite de Takayasu/tratamento farmacológico , Inibidores do Fator de Necrose Tumoral/uso terapêutico , Imunossupressores/uso terapêutico , Metotrexato/uso terapêuticoRESUMO
INTRODUCTION: Although patients with systemic lupus erythematosus (SLE) may benefit from health-care information in social media (SoMe), they may also be prone to misleading information. An assessment of the reliability, comprehensiveness, and quality of information uploaded to SoMe for Spanish-speaking patients with SLE is lacking. METHODS: This analytical observational study evaluates the videos uploaded to YouTube® in Spanish about SLE. Information about video length, engagement (i.e., views and likes), time on the internet, popularity index, and source was retrieved, and an evaluation on reliability, comprehensiveness, and quality was performed using standardized scores. RESULTS: One hundred eighty-six videos were included in the analysis. Most videos were considered as useful (87%) or useful patient opinion (8.1%), whereas only 2.2% were considered misleading and 2.7% as misleading patient opinion. The number of views (Median 7207 vs 113,877, p = .012), popularity index (Median 13.8 vs 168.7, p < .001), number of likes (Median 155 vs 3400, p < .001), and number of dislikes (Median 3 vs 138, p = .004) were higher for misleading videos. The videos uploaded by independent users had a higher engagement than those from government or news agencies, professional organizations or academic channels. Misleading videos and those uploaded by independent users had lower rates of reliability, comprehensiveness and quality (p < .001). CONCLUSIONS: Most of the information shown in YouTube® videos on SLE tends to be useful. However, audience engagement parameters are larger for misleading videos. Exploring the qualitative features of the most popular videos is necessary to establish what features are more engaging for the audiences and to improve the content and popularity of reliable videos on chronic diseases.
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Lúpus Eritematoso Sistêmico , Mídias Sociais , Humanos , Disseminação de Informação , Reprodutibilidade dos TestesRESUMO
The coexistence of systemic lupus erythematosus (SLE) and ANCA-associated vasculitis (AAV) as an overlapping syndrome is not common. Here, we report a case of a 33-year-old woman, with recent SLE diagnosis due to skin, kidney, articular, and immunologic compromise, in whom a chest CT scan showed bilateral nodules, consolidations, and tree-in-bud pattern; thoracoscopic lung biopsy revealed diffuse non-caseating granulomas, without other features of sarcoid, organizing pneumonia, or hypersensitivity pneumonitis with high positive p-ANCA titers. Overlap between SLE and AAV was a possible explanation for lupus granulomatous pneumonitis, and for this reason, a multidisciplinary meeting was held to evaluate complex patients with interstitial lung diseases patients.
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Vasculite Associada a Anticorpo Anticitoplasma de Neutrófilos , Doenças Pulmonares Intersticiais , Lúpus Eritematoso Discoide , Lúpus Eritematoso Sistêmico , Adulto , Vasculite Associada a Anticorpo Anticitoplasma de Neutrófilos/complicações , Vasculite Associada a Anticorpo Anticitoplasma de Neutrófilos/diagnóstico , Feminino , Humanos , Rim/patologia , Doenças Pulmonares Intersticiais/complicações , Lúpus Eritematoso Discoide/patologia , Lúpus Eritematoso Sistêmico/complicações , Lúpus Eritematoso Sistêmico/diagnósticoRESUMO
The objective of our study was to describe knowledge, attitudes and practices of Latin-American rheumatology patients regarding management and follow-up of their disease during COVID-19 pandemic. A cross-sectional observational study was conducted using a digital anonymous survey. Rheumatic patients ≥ 18 years from non-English-speaking PANLAR countries were included. Our survey included 3502 rheumatic patients living in more than 19 Latin-American countries. Median age of patients was 45.8(36-55) years and the majority (88.9%) was female. Most frequently self-reported disease was rheumatoid arthritis (48.4%). At least one anti-rheumatic treatment was suspended by 23.4% of patients. Fear of contracting SARS-Cov2 (27.7%) and economic issues (25%) were the most common reasons for drug discontinuation. Self-rated disease activity increased from 30 (7-50) to 45 (10-70) points during the pandemic. Communication with their rheumatologist during the pandemic was required by 55.6% of patients, mainly by telephone calls (50.2%) and social network messages (47.8%). An adequate knowledge about COVID-19 was observed in 43% of patients. Patients with rheumatic diseases in Latin America were negatively affected by the COVID-19 pandemic. An increase in self-rated disease activity, a reduction in medication adherence, and hurdles for medical follow-up were reported. Teleconsultation was perceived as a valid alternative to in-person visits during the pandemic.
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Antirreumáticos/uso terapêutico , COVID-19 , Conhecimentos, Atitudes e Prática em Saúde , Doenças Reumáticas/tratamento farmacológico , Estudos Transversais , Humanos , América Latina , PandemiasRESUMO
BACKGROUND/OBJECTIVE: Demand for rheumatology care has steadily increased in recent years. The number of specialists in this field, however, seems insufficient. No recent studies have diagnosed the attributes of rheumatology training in Latin America. METHODS: This is a descriptive cross-sectional study. We obtained data on each country through local rheumatologists of the Pan-American League Against Rheumatism, who acted as principal investigators for participating countries. Our sample was analyzed and described through means and standard deviations or through frequencies and percentages, depending on the variable. RESULTS: Countries with the most rheumatology-training programs were Brazil (n = 50), Argentina (n = 18), and Mexico (n = 15). Ecuador, Honduras, and Nicaragua do not have rheumatology-training programs. The countries with the most available slots for rheumatology residents were Brazil (n = 126) and Argentina (n = 36). To be admitted into rheumatology training, candidates were required to have completed graduate studies in internal medicine in 42.1% of the programs. In 8 countries (42.1%), residents are not required to pay tuition; the median cost of tuition in the remaining countries is US $528 (interquartile range, US $2153). CONCLUSIONS: Conditions associated with rheumatology training in Latin America vary. Significant differences exist in income and tuition fees for residents, for example, and 4 countries in Latin America do not currently offer programs. Information collected in this study will be useful when comparing the status of rheumatology services offered in Latin America with those in other countries. Most countries require a wider offering of rheumatology-training programs, as well as more available slots.
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Doenças Reumáticas , Reumatologia , Estudos Transversais , Humanos , América Latina/epidemiologia , Doenças Reumáticas/epidemiologia , Doenças Reumáticas/terapia , ReumatologistasRESUMO
To estimate prevalence and describe the main demographic characteristics of Behcet disease in Colombia. Cross-sectional study, based on official Ministry of Health registry data. 523 cases of Behcet disease (ICD-10 code: M352) were reported between 2012 and 2016, for a prevalence in people over 18 years old of 1.10 per 100,000 inhabitants, of which 68% are women, with a female-to-male ratio of 2.2:1, with greater prevalence within the 45-49 age group. This is the first study that shows demographic and epidemiological information on Behcet disease in Colombia. Prevalence seems to be low when compared with other similar studies in the region.
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Síndrome de Behçet/epidemiologia , Adolescente , Adulto , Distribuição por Idade , Idoso , Idoso de 80 Anos ou mais , Criança , Pré-Escolar , Colômbia/epidemiologia , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Pessoa de Meia-Idade , Prevalência , Sistema de Registros , Distribuição por Sexo , Adulto JovemRESUMO
Vasculitides associated with anti-neutrophil cytoplasmic antibodies are heterogeneous, systemic, low prevalence and high morbidity and mortality entities. They include granulomatosis with polyangiitis, microscopic polyangiitis and eosinophilic granulomatosis with polyangiitis. In Latin America, there are few descriptive registries of these patients. The objective of the study was to describe the demographic and clinical characteristics and in-hospital morbidity and mortality of patients with vasculitis associated with anti-neutrophil cytoplasmic antibodies in a university hospital in Colombia. This was a cross-sectional descriptive study. We performed computer searches with terms related to patients with anti-neutrophil cytoplasmic antibody-associated vasculitis, between 2005 and 2017 who met the American College of Rheumatology classification criteria for vasculitis associated with anti-neutrophil cytoplasmic antibodies, and their clinical and laboratory characteristics. One hundred and six patients with anti-neutrophil cytoplasmic antibody-associated vasculitis were included in the study. The average age was 55 years, and 57.5% were women. In 68.8% of the cases, the diagnosis was made during hospitalization, with an average hospital stay of 16.6 days (± 12.22). The distribution by type of vasculitis was: granulomatosis with polyangiitis 52%, microscopic polyangiitis 45.2% and eosinophilic granulomatosis with polyangiitis 1.8%. Alveolar hemorrhage occurred in 35% of patients; 20.7% had variable renal involvement, of which 53.8% progressed to advanced kidney disease. Treatment included glucocorticoids 91.5%, cyclophosphamide 62.2%, plasmapheresis 14.1%, and 41.5% required renal replacement therapy. In-hospital mortality was 16.5%, Sepsis was the most common cause of death. We present clinical information on a group of patients with anti-neutrophil cytoplasmic antibody-associated vasculitis; renal involvement was the the most common type of affectation. Both the clinical and serological characteristics of our registry were similar to those described in other Latin American and European cohorts, and a lower in-hospital mortality rate was evidenced.
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Vasculite Associada a Anticorpo Anticitoplasma de Neutrófilos/mortalidade , Adulto , Idoso , Vasculite Associada a Anticorpo Anticitoplasma de Neutrófilos/imunologia , Vasculite Associada a Anticorpo Anticitoplasma de Neutrófilos/fisiopatologia , Anticorpos Anticitoplasma de Neutrófilos/análise , Colômbia/epidemiologia , Estudos Transversais , Feminino , Mortalidade Hospitalar , Humanos , Nefropatias/etiologia , Tempo de Internação , Masculino , Pessoa de Meia-Idade , Sistema de RegistrosRESUMO
Polymyalgia rheumatica (PMR) affects elderly patients and is characterized by pain and stiffness of the shoulder girdle, pelvic girdle and cervical region, which can be associated with the presence of giant cell arteritis. Data on the epidemiology of this disease in Latin America are scarce. In Colombia, the Ministry of Health introduced SISPRO, a tool to collect nation-wide information from the health system. The information collected from SISPRO is available for scientific analysis. Using SISPRO data for the years 2012-2016, an analysis was made on the prevalence and characteristics of patients diagnosed with PMR. This is a descriptive epidemiological study using the International Statistical Classification of Diseases and Related Health Problems as search terms related to PMR, based on SISPRO data. Criteria for diagnosis are not explicitly addressed in each individual case. National records report 19,901 individuals diagnosed with PMR and estimated prevalence of 2 cases per 1000 inhabitants over 50 years old (based on a total population of 47,663,162), being more frequent in women (86% of cases), with a female/male ratio of 6.2:1. This is the first study that describes the demographic characteristics of PMR in Colombia. Our results are consistent with the age-related increase in prevalence and gender ratio. Likewise, there are differences between regions, which may be related to ancestry and environmental factors, which require further studies.
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Polimialgia Reumática/epidemiologia , Distribuição por Idade , Idoso , Idoso de 80 Anos ou mais , Colômbia/epidemiologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Polimialgia Reumática/diagnóstico , Prevalência , Sistema de Registros , Distribuição por Sexo , Fatores de TempoRESUMO
INTRODUCTION: Registries allow ascertaining the epidemiology of chronic diseases such as axial spondyloarthritis (axSpA). The Colombian Ministry of Health has implemented a National Health Registry (SISPRO) that collects data from each medical contact in the system, which provides close to universal coverage (around 98%). OBJECTIVE: To establish the 5-year prevalence of axSpA in Colombia, and to describe its demographics, using data from January 1st, 2017, to December 31st, 2021. METHODS: We performed an observational, cross-sectional study using the International Statistical Classification of Diseases and Related Health Problems as search terms related to ax-SpA, based on SISPRO data. We estimated the prevalence using three approaches: (1) ankylosing spondylitis (AS) diagnoses; (2) diagnoses compatible with axSpA; and (3) diagnoses compatible with axSpA, including sacroiliitis. We calculated prevalence per 100,000 inhabitants. RESULTS: Based on our three approaches, patients with a primary diagnosis compatible with ax-SpA ranged between 12,684 and 117,648, with an estimated 5-year adjusted prevalence between 26.3 and 244 cases per 100,000 inhabitants (0.03-0.2%). The male-to-female ratio ranged between 1.2:1 and 0.4:1, which was markedly skewed towards a higher prevalence in women when we included the code for sacroiliitis. We found the highest frequency of cases in the 50-54 years group. A differential prevalence was observed between different regions in our country, particularly in regions known to have European ancestors. CONCLUSION: This is the first study that describes demographic characteristics of ax-SpA in Colombia and offers valuable information for stakeholders. Key Points ⢠Using the official country-level health database, the prevalence of axSpA in Colombia ranges between 26.3 and 244 cases per 100,000 inhabitants (0.03% - 0.2%) ⢠The prevalence of axSpA peaked among the 50-54 years patient group, suggesting an increased survival ⢠Nations with a substantial admixture, such as Colombia, may present a differential prevalence of axSpA among regions within the country ⢠Including the ICD-10 code for sacroiliitis (M46.1) in epidemiological studies probably overestimates the frequency of axSpA.
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Sacroileíte , Espondilartrite , Espondilite Anquilosante , Feminino , Humanos , Masculino , Colômbia/epidemiologia , Estudos Transversais , Prevalência , Sistema de Registros , Sacroileíte/diagnóstico , Espondilartrite/diagnóstico , Espondilite Anquilosante/epidemiologia , Espondilite Anquilosante/diagnósticoRESUMO
Introduction: Artificial intelligence has presented exponential growth in medicine. The ChatGPT language model has been highlighted as a possible source of patient information. This study evaluates the reliability and readability of ChatGPT-generated patient information on chronic diseases in Spanish. Methods: Questions frequently asked by patients on the internet about diabetes mellitus, heart failure, rheumatoid arthritis (RA), chronic kidney disease (CKD), and systemic lupus erythematosus (SLE) were submitted to ChatGPT. Reliability was assessed by rating responses as (1) comprehensive, (2) correct but inadequate, (3) some correct and some incorrect, (4) completely incorrect, and divided between "good" (1 and 2) and "bad" (3 and 4). Readability was evaluated with the adapted Flesch and Szigriszt formulas. Results: And 71.67% of the answers were "good," with none qualified as "completely incorrect." Better reliability was observed in questions on diabetes and RA versus heart failure (p = 0.02). In readability, responses were "moderately difficult" (54.73, interquartile range (IQR) 51.59-58.58), with better results for CKD (median 56.1, IQR 53.5-59.1) and RA (56.4, IQR 53.7-60.7), than for heart failure responses (median 50.6, IQR 46.3-53.8). Conclusion: Our study suggests that the ChatGPT tool can be a reliable source of information in spanish for patients with chronic diseases with different reliability for some of them, however, it needs to improve the readability of its answers to be recommended as a useful tool for patients.
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BACKGROUND: Evidence describing the types and annual costs of biological treatments for psoriasis in Latin America is scarce. This study aimed to estimate the frequency of use and costs of biologic therapy for psoriasis in Colombia in 2019. METHODS: This secondary data analysis uses the International Classification of Diseases terms associated with psoriasis, excluding those related to psoriatic arthritis, based on data from the registry of the Colombian Ministry of Health. We estimated the prevalence of psoriasis per 100,000 inhabitants; then, we retrieved the frequency of use of biologic therapy in patients with psoriasis and estimated the cost per year of each and overall therapies in 2019 in US dollars (USD). RESULTS: There were 100,823 patients with psoriasis in Colombia in 2019, which amounts to a prevalence of 0.2% in the general population. Of those patients, 4.9% received biologic therapy, most frequently males (60%). The most commonly used biological therapies for psoriasis in Colombia in 2019 were ustekinumab (35.2%), with an annual cost per patient of $12,880 USD; adalimumab (26%), with a yearly cost per patient of $7130 USD; and secukinumab (19.8%), with an annual cost per patient of $6825 USD. CONCLUSION: This is the first study to describe the use and cost of biological therapy for psoriasis in Colombia. It provides valuable cost-awareness information for the Colombian health system.
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BACKGROUND: Clinical experience has shown that a single measure is not sufficient to assess disease activity in rheumatoid arthritis (RA). Various clinimetric tools are necessary to address the many clinical situations that can arise. METHODS: In order to develop a comprehensive measurement tool, the Pan American League of Associations for Rheumatology searched for the most frequent measures of disease activity applied in RA by means of a semi-systematic review of the available literature. RESULTS: We found that the most frequently reported measures of disease activity were the 28-joint Disease Activity Score, C-reactive protein, and the erythrocyte sedimentation rate, followed by patient-reported measures of pain and stiffness and many other composite indices and patient-reported outcome measures. The most frequent physician-reported sign of disease was the swollen joint count, and the most frequently self-reported feature was the increase in disease activity or flares. CONCLUSION: In this article, we present a new clinimetric tool developed based on expert consensus and on data retrieved from our search. Disease activity can be better assessed by combining various data sources, such as clinical, laboratory, and self-reported outcomes. These variables were included in our novel clinimetric tool. Key Points ⢠The goal of treatment of RA is to achieve the best possible control of inflammation, or even remission; therefore, disease management should include systematic and regular evaluation of inflammation and health status. ⢠Clinimetric tools evaluate a series of variables (e.g., symptoms, functional capacity, disease severity, quality of life, disease progression) and can reveal substantial prognostic and therapeutic differences between patients. ⢠Our clinimetric tool, which is based on a combination of data (e.g., clinical variables, laboratory results, PROMs), can play a relevant role in patient assessment and care.
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Antirreumáticos , Artrite Reumatoide , Humanos , Antirreumáticos/uso terapêutico , Qualidade de Vida , Índice de Gravidade de Doença , Artrite Reumatoide/tratamento farmacológico , Inflamação/tratamento farmacológico , Medidas de Resultados Relatados pelo PacienteRESUMO
OBJECTIVES: To explore the patient journey of people with fibromyalgia (FM) in Latin American countries in order to identify problems in health care and other areas that may be resolvable. METHODS: Qualitative study with phenomenological and content analysis approach through focus groups and patient journey (Ux; User Experience) methodology. Nine virtual focus groups were conducted with FM patients and healthcare professionals in Argentina, Mexico and Colombia recruited from key informants and social networks. RESULTS: Forty-three people participated (33 were clinicians and 10 were patients). The agents interacting with the patient in their disease journey are found in three spheres: healthcare (multiple medical specialists and other professionals), support and work life (including patient associations) and socioeconomic context. The line of the journey presents two large sections, two loops and a thin dashed line. The two major sections represent the time from first symptoms to medical visit (characterized by self-medication and denial) and the time from diagnosis to follow-up (characterized by high expectations and multiple contacts to make life changes that are not realized). The two loop phases include (1) succession of misdiagnoses and mistreatments and referrals to specialists and (2) new symptoms every so often, visits to specialists, diagnostic doubts, and impatience. Very few patients manage to reach the final phase of autonomy. CONCLUSION: The journey of a person with FM in Latin America is full of obstacles and loops. The desired goal is for all the agents involved to understand that self- management by the patient with FM is an essential part of success, and this can only be achieved with early access to resources and guidance from professionals.
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Fibromialgia , Humanos , Fibromialgia/diagnóstico , Fibromialgia/terapia , Fibromialgia/complicações , América Latina , México , Pesquisa Qualitativa , Grupos FocaisRESUMO
BACKGROUND: The Delphi technique is a consensus method aiming to obtain statistical estimations from a qualitative approach, through an iterative process that leads to consensus within experts. The main characteristics of the technique include iteration, anonymity, feedback, and consensus reaching. When high-quality, quantitative evidence on a particular topic is insufficient, the Delphi technique can be used for making decisions in clinical scenarios. However, the quality of studies on breast cancer conducted with this technique, has not been assessed. OBJECTIVE: We aim to evaluate the quality of studies on breast cancer which used the Delphi technique as their method. METHODS: A quality assessment tool (Quali-D) was created through consensus among experts on the Delphi technique. Then, the tool was applied to studies on breast cancer which used the Delphi technique as their method. RESULTS: Studies conducted through the Delphi technique mainly assessed for quality indicators and expressed needs in patients with breast cancer. High-quality characteristics were reported in 63.89% of the studies. 98.61% used the Delphi technique due to lack of a more adequate method to solve their research question. 98.61% summarized and presented results in a clear way. In 91.67% of the studies, at least two rounds were conducted. 86.11% described the methods for expert selection in a complete manner. Only 54.17% of the studies reported an anonymous process and 4.17% of the studies disclosed conflicts of interest thoroughly. CONCLUSIONS: A variety of topics were assessed through the Delphi technique in cases where no other technique would have been more appropriate for assessing these issues. Significant limitations are present in terms of anonymity and full disclosure of conflicts of interest. We found that the quality of studies conducted with the Delphi technique regarding breast cancer is overall good. However, the limitations of each study must be considered when applying their results to clinical practice.
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Neoplasias da Mama , Humanos , Feminino , Técnica Delphi , ConsensoRESUMO
INTRODUCTION: Social media (SoMe) has reshaped access to health information, which may benefit patients with rheumatoid arthritis (RA), although an evaluation of the characteristics of contents for Spanish-speaking patients is lacking. We aimed to assess patient engagement, reliability, comprehensiveness, and quality of data uploaded to YouTube® for Spanish-speaking patients. METHODS: We evaluated the videos uploaded to YouTube® in Spanish about RA. Information about video length, engagement (i.e., views, likes, popularity index), time online, and the source was retrieved; we appraised reliability (DISCERN), comprehensiveness (content score), and quality (Global Quality Score) using standardized scores. RESULTS: We included 200 videos in the study and classified 67% of the videos as useful. These videos had a higher number of views (19,491 [10,132-61,162] vs. 11,208 [8183-20,538]), a longer time online (1156 [719-2254] vs. 832 [487-1708] days), and a shorter duration (6.3 [3.4-15.8] vs. 11.8 [7.4-20.3] min). Engagement parameters were similar between useful and misleading videos. Useful videos had higher reliability, comprehensiveness, and quality scores. Useful videos were mainly uploaded by independent users and government/news agencies; academic organizations offered only 15% of useful videos. CONCLUSIONS: Most of the information in YouTube® for Spanish-speaking patients with RA is useful; however, patient engagement is similar between useful and misleading content. More substantial involvement of academia in developing high-quality educational multimedia is warranted.
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Artrite Reumatoide , Mídias Sociais , Humanos , Disseminação de Informação , Reprodutibilidade dos Testes , Fonte de InformaçãoRESUMO
INTRODUCTION: Congenital heart diseases are the most common congenital disorders in the world population, they generally manifest after birth. Altitudes between 2,500-3,500 meters above sea level have been linked to the high incidence of congenital heart diseases such as patent ductus arteriosus, atrial septum defects, and ventricular septum defects. OBJETIVES: To characterize clinically and sociodemographically the patients diagnosed with congenital heart disease from low, moderate and high altitudes in a regional hospital in Colombia. METHODOLOGY: Observational, descriptive retrospective study. All patients under 18 years of age with a diagnosis of congenital heart disease, treated at the San Rafael de Tunja University Hospital between 2015 and 2021, were included. RESULTS: 51.9% of the patients were male, 16.3% had a history of prematurity and 9.1% had a diagnosis of Down syndrome. The most frequent heart diseases were: persistent ductus arteriosus 35.1%, followed by ventricular communication representing 21.6% and intra-atrial communication with 19.7%). CONCLUSIONS: They must eestablish strategies such as screening and timely diagnosis of congenital heart disease in at-risk populations in order to improve the life prognosis of patients and the outcome of the disease.
INTRODUCCIÓN: Las cardiopatías congénitas son los trastornos congénitos más frecuentes en la población mundial, se manifiestan generalmente después del nacimiento. Las altitudes entre 2,500 y 3,500 metros sobre el nivel del mar se han relacionado con la alta incidencia de cardiopatías congénitas como el ductus arterioso persistente, los defectos del septum auricular y los defectos del septum ventricular. OBJETIVO: Caracterizar clínica y sociodemográficamente los pacientes con diagnóstico de cardiopatías congénitas procedentes de altitudes bajas, moderadas y altas en un hospital regional de Colombia. METODOLOGÍA: Estudio observacional, descriptivo retrospectivo. Se incluyeron todos los pacientes menores de 18 años con diagnóstico de cardiopatías congénitas, atendidos en el Hospital Universitario San Rafael de Tunja entre el 2015 y 2021. RESULTADOS: El 51.9% de los pacientes eran de sexo masculino, el 16.3% tenían antecedente de prematurez y el 9.1% tenían diagnóstico de síndrome de Down. Las cardiopatías más frecuentes fueron: ductus arterioso persistente (35.1%), seguido de comunicación interventricular (21.6%) y comunicación intrauricular (19.7%). CONCLUSIONES: Se deben establecer estrategias como el tamizaje y diagnóstico oportuno de las cardiopatías congénitas en poblaciones de riesgo con el fin de mejorar el pronóstico de vida de los pacientes y desenlace de la enfermedad.