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1.
Arthritis Care Res (Hoboken) ; 76(5): 600-607, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38108087

RESUMO

Starting in 2015, pediatric rheumatology fellowship training programs were required by the Accreditation Council for Graduate Medical Education to assess fellows' academic performance within 21 subcompetencies falling under six competency domains. Each subcompetency had four or five milestone levels describing developmental progression of knowledge and skill acquisition. Milestones were standardized across all pediatric subspecialties. As part of the Milestones 2.0 revision project, the Accreditation Council for Graduate Medical Education convened a workgroup in 2022 to write pediatric rheumatology-specific milestones. Using adult rheumatology's Milestones 2.0 as a starting point, the workgroup revised the patient care and medical knowledge subcompetencies and milestones to reflect requirements and nuances of pediatric rheumatology care. Milestones within four remaining competency domains (professionalism, interpersonal and communication skills, practice-based learning and improvement, and systems-based practice) were standardized across all pediatric subspecialties, and therefore not revised. The workgroup created a supplemental guide with explanations of the intent of each subcompetency, 25 in total, and examples for each milestone level. The new milestones are an important step forward for competency-based medical education in pediatric rheumatology. However, challenges remain. Milestone level assignment is meant to be informed by results of multiple assessment methods. The lack of pediatric rheumatology-specific assessment tools typically result in clinical competency committees determining trainee milestone levels without such collated results as the foundation of their assessments. Although further advances in pediatric rheumatology fellowship competency-based medical education are needed, Milestones 2.0 importantly establishes the first pediatric-specific rheumatology Milestones to assess fellow performance during training and help measure readiness for independent practice.


Assuntos
Competência Clínica , Educação de Pós-Graduação em Medicina , Bolsas de Estudo , Pediatria , Reumatologia , Reumatologia/educação , Reumatologia/normas , Humanos , Competência Clínica/normas , Educação de Pós-Graduação em Medicina/normas , Pediatria/educação , Pediatria/normas
2.
Clin Exp Rheumatol ; 36(5): 920-928, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-29600940

RESUMO

OBJECTIVES: To investigate the burden of systemic juvenile idiopathic arthritis (SJIA) on health-related quality of life (HRQOL) and resource use of patients and caregivers (families) on biologic therapy. METHODS: This international study assessed SJIA burden in patients on biologics, using a caregiver questionnaire and retrospective chart review. Validated measures included: Child Health Questionnaire Parent-Form 50 (CHQ-PF50), 36-Item Short-Form Health Survey (SF-36v2) and Work Productivity and Activity Impairment questionnaire: Specific Health Problem (WPAI:SHP). Caregivers completed function, treatment satisfaction and resource utilisation questions. RESULTS: Sixty-one biologic treated patients participated (12 anakinra, 25 canakinumab, 24 tocilizumab). Mean age at diagnosis and survey completion was 6.4 and 11.3 years, respectively. Mean (±SD: standard deviation) CHQ-PF50 physical (PhS) and psychosocial (PsS) summary scores were significantly lower in SJIA patients than a normative population (PhS: 40.0±18.2 vs. 53.0±8.8; PsS: 46.6±11.3 vs. 51.2±9.1) as was caregivers' mean SF-36v2 mental component score (MCS; 46.2±10.7 vs. 50.0±10). Assistive devices were required by 54%; 20% required home/car alterations. According to caregivers, biologic treatment completely improved SJIA symptoms in 48% on canakinumab or tocilizumab and 32% on anakinra. Over 2 months, patients missed 2.9 school days due to SJIA (10% yearly loss). Caregivers lost 25 work days annually and 27.5 days of productivity (WPAI-SHP: mean absenteeism 10%; presenteeism 11%). Yearly SJIA travel/treatment costs averaged $1,130. CONCLUSIONS: SJIA patients on biologic therapy experience HRQOL impairment, caregivers' mental well-being suffers and productivity losses and expenses are incurred. Therapeutic interventions that reduce the burden of SJIA are required.


Assuntos
Antirreumáticos/uso terapêutico , Artrite Juvenil/tratamento farmacológico , Produtos Biológicos/uso terapêutico , Cuidadores/psicologia , Efeitos Psicossociais da Doença , Qualidade de Vida , Absenteísmo , Antirreumáticos/efeitos adversos , Antirreumáticos/economia , Artrite Juvenil/economia , Artrite Juvenil/epidemiologia , Artrite Juvenil/psicologia , Produtos Biológicos/efeitos adversos , Produtos Biológicos/economia , Criança , Estudos Transversais , Custos de Medicamentos , Eficiência , Emprego/economia , Europa (Continente)/epidemiologia , Feminino , Gastos em Saúde , Inquéritos Epidemiológicos , Humanos , Masculino , Presenteísmo/economia , Indução de Remissão , Estudos Retrospectivos , Resultado do Tratamento , Estados Unidos/epidemiologia
3.
Arthritis Care Res (Hoboken) ; 63(7): 998-1005, 2011 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-21360697

RESUMO

OBJECTIVE: To examine trends in the specialty care hospitalization of pediatric rheumatology patients and determine how nonclinical factors influence access. METHODS: This study used California's Office of Statewide Health Planning and Development discharge database to perform a retrospective population analysis of pediatric rheumatology hospitalizations in California between 1999 and 2007. We used logistic regression to examine the relationship between hospitalization in specialty care centers with a pediatric rheumatologist and nonclinical patient characteristics. RESULTS: A total of 18,641 pediatric discharges revealed that 57% were discharged from a specialty care center with a pediatric rheumatologist. Multivariate analysis showed that the factors associated with increased utilization of specialty care centers with a pediatric rheumatologist were public insurance (odds ratio [OR] 1.62, 95% confidence interval [95% CI] 1.51-1.74; P < 0.0001), being Hispanic (OR 1.29, 95% CI 1.19-1.40; P < 0.0001) or Asian non-Hispanic (OR 1.39, 95% CI 1.26-1.54; P < 0.0001), and high pediatric rheumatology specialty care bed supply (OR 2.79, 95% CI 2.49-3.14; P < 0.0001). A decreased utilization of specialty care centers with a pediatric rheumatologist was seen for patients ages <1 year (OR 0.45, 95% CI 0.40-0.52; P < 0.0001), ages 1-4 years (OR 0.50, 95% CI 0.46-0.55; P < 0.0001), ages 5-9 years (OR 0.68, 95% CI 0.62-0.75; P < 0.0001), ages 15-18 years (OR 0.51, 95% CI 0.47-0.56; P < 0.0001), males (OR 0.75, 95% CI 0.70-0.80; P < 0.0001), and patients residing farther away from a specialty care center with a pediatric rheumatologist (OR 0.57, 95% CI 0.51-0.63; P < 0.0001). CONCLUSION: Nonclinical factors play an increasingly important role in the hospitalization patterns of pediatric rheumatology patients in California. Understanding these factors is crucial if we are to ensure that the variation in access to care reflects clinical need.


Assuntos
Acessibilidade aos Serviços de Saúde , Necessidades e Demandas de Serviços de Saúde , Pediatria , Doenças Reumáticas/terapia , Reumatologia , Adolescente , California , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Pacientes Internados , Modelos Logísticos , Masculino , Razão de Chances
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