RESUMO
Although the public health emergency associated with the COVID-19 pandemic has ended, challenges remain, especially for individuals with rheumatic diseases. We aimed to assess the historical and ongoing effects of COVID-19 on individuals with rheumatic diseases and rheumatology practices globally, with specific attention to vulnerable communities and lessons learned. We reviewed literature from several countries and regions, including Africa, Australia and New Zealand, China, Europe, Latin America, and the US. In this review, we summarize literature that not only examines the impact of the pandemic on individuals with rheumatic diseases, but also research that reports the lasting changes to rheumatology patient care and practice, and health service use. Across countries, challenges faced by individuals with rheumatic diseases during the pandemic included disruptions in health care and medication supply shortages. These challenges were associated with worse disease and mental health outcomes in some studies, particularly among those who had social vulnerabilities defined by socioeconomic, race, or rurality. Moreover, rheumatology practice was impacted in all regions, with the uptake of telemedicine and changes in health care utilization. While many regions developed rapid guidelines to disseminate scientific information, misinformation and disinformation remained widespread. Finally, vaccine uptake among individuals with rheumatic diseases has been uneven across the world. As the acute phase of the pandemic wanes, ongoing efforts are needed to improve health care access, stabilize rheumatology drug supplies, improve public health communication, and implement evidence-based vaccination practices to reduce COVID-19 morbidity and mortality among individuals with rheumatic diseases.
Assuntos
COVID-19 , Equidade em Saúde , Doenças Reumáticas , Reumatologia , Humanos , COVID-19/epidemiologia , Pandemias/prevenção & controle , SARS-CoV-2 , Doenças Reumáticas/diagnóstico , Doenças Reumáticas/epidemiologia , Doenças Reumáticas/terapia , Acessibilidade aos Serviços de SaúdeRESUMO
SLE increases disease burden in those affected with it, and that is particularly the case in low- and middle-income countries. The 2019 Addressing Lupus Pillar of Health Advancement project is a multiphase initiative whose objective is to recognize, hierarchize and establish approaches for diligent SLE research, care and access to healthcare. Lack of access to high-cost medications that have been shown to be efficacious in the short term and that potentially reduce damage in SLE is a complex issue. In this review, we highlight opportunities and plans of action to diminish costs and improve access to therapies, which should be recognized and executed, preferably within regional strategies with multiple stakeholders (including supranational organizations, governments, the pharmaceutical industry, medical societies and the general population) connected with and grounded in structured and clear cost-effectiveness analysis.
Assuntos
Países em Desenvolvimento , Lúpus Eritematoso Sistêmico , Humanos , Atenção à Saúde , Efeitos Psicossociais da Doença , Lúpus Eritematoso Sistêmico/tratamento farmacológicoRESUMO
The Physician Global Assessment International Standardisation COnsensus in Systemic Lupus Erythematosus (PISCOS) study aimed to obtain an evidence-based and expert-based consensus standardisation of the Physician Global Assessment (PGA) scoring of disease activity in systemic lupus erythematosus (SLE). An international panel of 79 SLE experts participated in a three-round Delphi consensus process, in which 41 statements related to the PGA in SLE were rated, using a 0 (strongly disagree) to 10 (strongly agree) numerical rating scale. Statements with agreement of 75% or greater were selected and further validated by the expert panel. Consensus was reached on 27 statements, grouped in 14 recommendations, for the use of the PGA in SLE, design of the PGA scale, practical considerations for PGA scoring, and the relationship between PGA values and levels of disease activity. Among these recommendations, the expert panel agreed that the PGA should consist of a 0-3 visual analogue scale for measuring disease activity in patients with SLE in the preceding month. The PGA is intended to rate the overall disease activity, taking into account the severity of active manifestations and clinical laboratory results, but excluding organ damage, serology, and subjective findings unrelated to disease activity. The PGA scale ranges from "no disease activity" (0) to the "most severe disease activity" (3) and incorporates the values 1 and 2 as inner markers to categorise disease activity as mild (≥0·5 to 1), moderate (>1 and ≤2) and severe (>2 to 3). Only experienced physicians can rate the PGA, and it should be preferably scored by the same rater at each visit. The PISCOS results will allow for increased homogeneity and reliability of PGA ratings in routine clinical practice, definitions of remission and low disease activity, and future SLE trials.
RESUMO
OBJECTIVE: To determine the reliability of SLE patients' disease activity measurements. METHODS: This was a cross-sectional study conducted (August 2016-December 2017) at 2 main public Peruvian hospitals, 1 with a comprehensive lupus care program. Patients assessed their disease activity with a visual analog scale (VAS) (0-100 mm) or a numerical rating scale (NRS) (0-4) before and after their physician's (MD's) assessment. Demographic and disease-related characteristics were recorded. Reliability of patients' disease activity before and after MD's assessment was determined using Spearman rank correlation. Factors possibly associated with this variability were examined with Spearman rank correlation and Mann-Whitney U test. RESULTS: Two hundred forty, mostly Mestizo, SLE patients were included; mean (SD) age and disease duration (diagnosis) were 34.9 (12.9) years and 10.1 (7.0) years, respectively. The Mexican version of the Systemic Lupus Erythematosus Disease Activity Index was 1.9 (2.7), and the Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index was 1.2 (1.5). The correlations between NRS and VAS before and after the MD's assessment were ρ = 0.839; p < 0.001; and ρ = 0.872; p < 0.001, respectively. Visual analog scale and NRS were higher before than after the MD's assessment (VAS 29.3 [26.5] and 26.5 [24.9], p = 0.052; and NRS (1.5 [1.2] and 1.3 [1.1], p = 0.003); only the comprehensive program explained this variability (p = 0.043). The reliability of VAS and NRS was ρ = 0.917 and ρ = 0.861, p < 0.001, before and after for the comprehensive program and ρ = 0.710 and ρ = 0.785, p < 0.001, for before and after for the regular program. CONCLUSIONS: Both VAS an NRS are highly reliable. Patients scored higher before than after their physicians' assessment but that these differences were smaller for the patients in the comprehensive care program than in the regular one.
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Lúpus Eritematoso Sistêmico , Estudos Transversais , Humanos , Lúpus Eritematoso Sistêmico/diagnóstico , Medição da Dor , Reprodutibilidade dos Testes , Índice de Gravidade de Doença , Escala Visual AnalógicaRESUMO
OBJECTIVE: To examine hematological manifestations' correlates and their impact on damage accrual and mortality in SLE patients from the multiethnic, Latin American, GLADEL cohort. METHODS: In patients with recent SLE diagnosis (≤2 years), the association between follow-up hematological manifestations (per ACR criteria) and socio-demographic and clinical variables was examined by univariable and multivariable logistic regressions; their impact on damage accrual and mortality was examined by Poisson and Cox proportional-hazards regression analyses, respectively. RESULTS: Of 1437 patients, 948 (66.0%) developed ≥1 hematological manifestation [5.5% hemolytic anemia (AHA), 16.3% thrombocytopenia, and 56.4% lymphopenia] over 4.3 (3.3) follow-up years. Younger age, Mestizo ethnicity, hematologic disorder (at/or before SLE diagnosis), and first damage recorded were associated with hematological manifestations while antimalarials were negatively associated. AHA (at/or before SLE diagnosis), anti-Sm, and anti-RNP antibodies were associated with subsequent AHA occurrence while musculoskeletal involvement was negatively associated. Thrombocytopenia (at/or before SLE diagnosis), AHA, anti-phospholipid antibodies (aPLs), anti-SSA/Ro, anti-SSB/La antibodies, and first damage recorded were associated with later thrombocytopenia occurrence. Lymphopenia (at/or before SLE diagnosis), younger age at diagnosis, Mestizo ethnicity, having medical insurance, and first damage recorded were associated with subsequent lymphopenia occurrence while antimalarials and azathioprine treatment were negatively associated. AHA was associated with damage accrual and mortality after adjusting for variables known to affect these outcomes. CONCLUSIONS: Mestizo ethnicity and early hematological manifestations are risk factors for their subsequent occurrence while antimalarials have a protective effect. The associations between AHA and aPLs and thrombocytopenia were corroborated. AHA contributes independently to damage accrual and diminished survival.
Assuntos
Anemia Hemolítica/sangue , Lúpus Eritematoso Sistêmico/sangue , Linfopenia/sangue , Trombocitopenia/sangue , Adolescente , Adulto , Fatores Etários , Anemia Hemolítica/etnologia , Anemia Hemolítica/etiologia , Anticorpos Antinucleares/imunologia , Anticorpos Antifosfolipídeos/imunologia , Antimaláricos/uso terapêutico , Autoanticorpos/imunologia , Azatioprina/uso terapêutico , População Negra , Etnicidade , Feminino , Humanos , Imunossupressores/uso terapêutico , Indígenas Sul-Americanos , Seguro Saúde , América Latina , Modelos Logísticos , Estudos Longitudinais , Lúpus Eritematoso Sistêmico/complicações , Lúpus Eritematoso Sistêmico/tratamento farmacológico , Lúpus Eritematoso Sistêmico/imunologia , Linfopenia/etnologia , Linfopenia/etiologia , Masculino , Análise Multivariada , Modelos de Riscos Proporcionais , Ribonucleoproteínas/imunologia , Trombocitopenia/etnologia , Trombocitopenia/etiologia , População Branca , Adulto JovemRESUMO
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.