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1.
J Rheumatol ; 51(4): 403-407, 2024 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-38302168

RESUMO

OBJECTIVE: Using Canadian Alliance of Pediatric Rheumatology Investigators (CAPRI) juvenile idiopathic arthritis (JIA) registry data, we describe (1) clinical characteristics of patients with JIA transitioning to adult care, (2) prevalence of disease-related damage and complications, and (3) changes in disease activity during the final year prior to transfer. METHODS: Registry participants who turned 17 years between February 2017 and November 2021 were included. Clinical characteristics and patient-reported outcomes (PROs) at the last recorded pediatric rheumatology visit, and changes observed in the year prior to that visit were analyzed. Physicians completed an additional questionnaire characterizing cumulative disease-related damage and adverse events by age 17 years. RESULTS: At their last visit, 88 of 131 participants (67%) had inactive and 42 (32%) had active disease. Overall, 96 (73%) were on medications and 41 (31%) were on biologic disease-modifying antirheumatic drugs. Among 80 participants for whom the additional questionnaire was completed, 26% had clinically detected joint damage, 31% had joint damage on imaging, 14% had uveitis, and 7.5% had experienced at least 1 serious adverse event. During the final year, 44.2% of patients were in remission, 28.4% attained inactive disease, and 27.4% became or remained active. Mean scores of PROs were stable overall during that last year, but a minority reported marked worsening. CONCLUSION: A substantial proportion of youth with JIA transitioning to adult care in Canada had a high disease burden, which was reflected by their degree of disease activity, joint damage, or ongoing medication use. These results will inform pediatric and adult providers of anticipated needs during transition of care.


Assuntos
Antirreumáticos , Artrite Juvenil , Reumatologia , Adulto , Humanos , Adolescente , Criança , Artrite Juvenil/tratamento farmacológico , Canadá , Antirreumáticos/uso terapêutico , Sistema de Registros
2.
Immunotargets Ther ; 12: 175-186, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-38089168

RESUMO

A significant improvement in the survival of patients with systemic lupus erythematosus (SLE) over recent decades is largely attributed to the impact of disease-modifying therapies on end-organ damage. Thus, cardiovascular disease now represents the leading cause of mortality in SLE. Various disease-specific mechanisms are responsible for advanced atherosclerosis, as they lead to premature endothelial dysfunction, arterial stiffness, arterial wall thickening, and plaque formation. Consequently, in the assessment of cardiovascular risk in SLE, we must not only consider traditional risk factors (ie, age, gender, dyslipidemia) but also the additional role of non-traditional risk factors such as persistent disease activity and prolonged corticosteroid use. Cardiovascular risk assessment incorporates general cardiovascular screening, as existing risk prediction scores underestimate cardiovascular risk in this patient population. There is also an expanding role of imaging modalities in screening. Risk reduction strategies integrate unique considerations for the use of low-dose aspirin and more stringent hypertension targets. Hydroxychloroquine is the only disease-modifying therapy with known cardiovascular benefit in SLE, though this is a promising area of study.

5.
Lancet Rheumatol ; 3(10): e707-e714, 2021 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-34316727

RESUMO

BACKGROUND: The impact and consequences of the COVID-19 pandemic on people with rheumatic disease are unclear. We developed the COVID-19 Global Rheumatology Alliance Patient Experience Survey to assess the effects of the COVID-19 pandemic on people with rheumatic disease worldwide. METHODS: Survey questions were developed by key stakeholder groups and disseminated worldwide through social media, websites, and patient support organisations. Questions included demographics, rheumatic disease diagnosis, COVID-19 diagnosis, adoption of protective behaviours to mitigate COVID-19 exposure, medication access and changes, health-care access and communication with rheumatologists, and changes in employment or schooling. Adults age 18 years and older with inflammatory or autoimmune rheumatic diseases were eligible for inclusion. We included participants with and without a COVID-19 diagnosis. We excluded participants reporting only non-inflammatory rheumatic diseases such as fibromyalgia or osteoarthritis. FINDINGS: 12 117 responses to the survey were received between April 3 and May 8, 2020, and of these, 10 407 respondents had included appropriate age data. We included complete responses from 9300 adults with rheumatic disease (mean age 46·1 years; 8375 [90·1%] women, 893 [9·6%] men, and 32 [0·3%] participants who identified as non-binary). 6273 (67·5%) of respondents identified as White, 1565 (16·8%) as Latin American, 198 (2·1%) as Black, 190 (2·0%) as Asian, and 42 (0·5%) as Native American or Aboriginal or First Nation. The most common rheumatic disease diagnoses included rheumatoid arthritis (3636 [39·1%] of 9300), systemic lupus erythematosus (2882 [31·0%]), and Sjögren's syndrome (1290 [13·9%]). Most respondents (6921 [82·0%] of 8441) continued their antirheumatic medications as prescribed. Almost all (9266 [99·7%] of 9297) respondents adopted protective behaviours to limit SARS-CoV-2 exposure. A change in employment status occurred in 2524 (27·1%) of 9300) of respondents, with a 13·6% decrease in the number in full-time employment (from 4066 to 3514). INTERPRETATION: People with rheumatic disease maintained therapy and followed public health advice to mitigate the risks of COVID-19. Substantial employment status changes occurred, with potential implications for health-care access, medication affordability, mental health, and rheumatic disease activity. FUNDING: American College of Rheumatology.

6.
ACR Open Rheumatol ; 3(4): 260-265, 2021 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-33711192

RESUMO

OBJECTIVE: The transition from pediatric to adult rheumatology care represents a particularly vulnerable time for patients with juvenile idiopathic arthritis (JIA) and childhood-onset systemic lupus erythematosus (cSLE). Improving self-management skills is important in optimizing health care transition. The study's objectives were to 1) examine variability in transition readiness of adolescents and young adults within and between different ages, sexes, and disease types; 2) determine the association between age and transition readiness; and 3) identify specific challenges to transition readiness for adolescents. METHODS: Over 1 year, patients 14 to 20 years of age with JIA or cSLE were recruited from pediatric transition and young adult clinics at a single academic institution. Participants completed the 14-item Transition-Q at a single time point. Total scores range from 0 to 100; higher scores indicate greater health care self-management skills as a proxy for transition readiness. Descriptive statistics summarized patient characteristics and Transition-Q scores for the population. Regression analyses determined the association between age, sex, and disease type and Transition-Q score. RESULTS: Among 70 participants, 61 had JIA and 9 cSLE (mean disease duration 4.6 years). The mean (SD) total Transition-Q score was 59.8 (14.9). Age was significantly associated with Transition-Q score (standardized ß = 0.372l P = 0.002). The most commonly reported challenges were seeing the physician alone (without parents), making one's own appointments, picking up prescriptions, and independent transportation for appointments. CONCLUSION: Transition readiness appears to increase with patient age. There is significant variability in Transition-Q scores between patients of the same age, suggesting that an individualized approach to improving self-management skills is necessary.

8.
Acad Med ; 88(11): 1765-77, 2013 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-24072111

RESUMO

PURPOSE: To review the literature on the social and learning environments experienced by underrepresented minority (URM) medical students to determine what type of interventions are needed to eliminate potential barriers to enrolling and retaining URM students. METHOD: The authors searched MEDLINE, PubMed, Ovid HealthStar, and Web of Science, and the reference lists of included studies, published between January 1, 1980, and September 15, 2012. Studies of the learning and social environments and of students' satisfaction, experiences with discrimination or unfair practices, and academic performance or progress, as well as assessments of programs or interventions to improve URM students' academic performance, were eligible for inclusion. RESULTS: The authors identified 28 studies (27 unique data sets) meeting the inclusion criteria. The results of the included studies indicated that URM students experienced less supportive social and less positive learning environments, were subjected to discrimination and racial harassment, and were more likely to see their race as having a negative impact on their medical school experiences than non-URM students. Academic performance on standardized exams was worse, progress less timely, and attrition higher for URM students as well. CONCLUSIONS: For URM students, an adverse climate may be decreasing the attractiveness of careers in medicine, impairing their academic performance, and increasing attrition. Improvements to the social and learning environments experienced by URM students are needed to make medicine a more inclusive profession. The current environment of health care reform creates an opportunity for institutions to implement strategies to achieve this goal.


Assuntos
Escolha da Profissão , Aprendizagem , Grupos Minoritários , Meio Social , Estudantes de Medicina , Adulto , Negro ou Afro-Americano , Avaliação Educacional , Humanos , Grupos Minoritários/estatística & dados numéricos , Narração , Apoio Social , Estudantes de Medicina/estatística & dados numéricos
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