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1.
BMC Health Serv Res ; 19(1): 572, 2019 Aug 14.
Artigo em Inglês | MEDLINE | ID: mdl-31412858

RESUMO

BACKGROUND: The study evaluates Performance Measures (PMs) for Juvenile Idiopathic Arthritis (JIA): The percentage of patients with new onset JIA with at least one visit to a pediatric rheumatologist in the first year of diagnosis (PM1); and the percentage of patients with JIA under rheumatology care seen in follow-up at least once per year (PM2). METHODS: Validated JIA case ascertainment algorithms were used to identify cases from provincial health administrative databases in Manitoba, Canada in patients < 16 years between 01/04/2005 and 31/03/2015. PM1: Using a 3-year washout period, the percentage of incident JIA patients with ≥1 visit to a pediatric rheumatologist in the first year was calculated. For each fiscal year, the proportion of patients expected to be seen in follow-up who had a visit were calculated (PM2). The proportion of patients with gaps in care of > 12 and > 14 months between consecutive visits were also calculated. RESULTS: One hundred ninety-four incident JIA cases were diagnosed between 01/04/2008 and 03/31/2015. The median age at diagnosis was 9.1 years and 71% were female. PM1: Across the years, 51-81% of JIA cases saw a pediatric rheumatologist within 1 year. PM2: Between 58 and 78% of patients were seen in yearly follow-up. Gaps > 12, and > 14, months were observed once during follow-up in 52, and 34%, of cases, and ≥ twice in 11, and 5%, respectively. CONCLUSIONS: Suboptimal access to pediatric rheumatologist care was observed which could lead to diagnostic and treatment delays and lack of consistent follow-up, potentially negatively impacting patient outcomes.


Assuntos
Artrite Juvenil/terapia , Acesso aos Serviços de Saúde/estatística & dados numéricos , Encaminhamento e Consulta/estatística & dados numéricos , Algoritmos , Artrite Juvenil/epidemiologia , Criança , Feminino , Seguimentos , Humanos , Masculino , Manitoba/epidemiologia , Determinação de Necessidades de Cuidados de Saúde , Reumatologia
2.
Pediatr Rheumatol Online J ; 17(1): 51, 2019 07 26.
Artigo em Inglês | MEDLINE | ID: mdl-31349785

RESUMO

BACKGROUND: To describe the demographic, clinical, and treatment characteristics of youth diagnosed with juvenile primary fibromyalgia syndrome (JPFS) who are seen in pediatric rheumatology clinics. METHODS: Information on demographics, symptoms, functioning, and treatments recommended and tried were obtained on patients with JPFS as part of a multi-site patient registry (the Childhood Arthritis and Rheumatology Research Alliance Legacy Registry). Data were summarized using descriptive statistics. In a subset of patients completing registry follow-up visits, changes in symptoms, pain, and functioning were evaluated using growth modeling. RESULTS: Of the 201 patients with JPFS enrolled in the registry, most were Caucasian/White (85%), non-Hispanic (83%), and female (84%). Ages ranged from 9 to 20 years (M = 15.4 + 2.2). The most common symptoms reported were widespread musculoskeletal pain (91%), fatigue (84%), disordered sleep (82%), and headaches (68%). Pain intensity was rated as moderate to severe (M = 6.3 + 2.4/10). Scores on measures of functioning indicated mild to moderate impairment, with males observed to report significantly greater impairments. For the 37% of the initial cohort having follow-up data available, indicators of function and well-being were found to either worsen over time or remain relatively unchanged. CONCLUSIONS: The symptoms of JPFS remained persistent and disabling for many patients treated by pediatric rheumatologists. Further study appears warranted to elucidate gender differences in the impact of JPFS symptoms. Work also is needed to identify accessible and effective outpatient treatment options for JPFS that can be routinely recommended or implemented by pediatric rheumatology providers.


Assuntos
Fibromialgia/epidemiologia , Adolescente , Anti-Inflamatórios não Esteroides/uso terapêutico , Antidepressivos/uso terapêutico , Antirreumáticos/uso terapêutico , Artrite Juvenil/epidemiologia , Artrite Juvenil/terapia , Criança , Dor Crônica/epidemiologia , Dor Crônica/etiologia , Fadiga/etiologia , Feminino , Fibromialgia/terapia , Transtornos da Cefaleia/etiologia , Humanos , Masculino , Dor Musculoesquelética/epidemiologia , Dor Musculoesquelética/etiologia , Modalidades de Fisioterapia , Qualidade de Vida , Sistema de Registros , Estudos Retrospectivos , Transtornos do Sono-Vigília/etiologia , Resultado do Tratamento , Estados Unidos/epidemiologia , Adulto Jovem
3.
Rev Chil Pediatr ; 90(3): 283-292, 2019 Jun.
Artigo em Espanhol | MEDLINE | ID: mdl-31344188

RESUMO

INTRODUCTION: Juvenile idiopathic arthritis (JIA) is a rheumatologic disease in children under 16 years old, which causes early physical disability. The use of hydrotherapy Watsu in these patients is propo sed. OBJECTIVE: To evaluate the effectiveness of Watsu compared to conventional hydrotherapy on health-related quality of life (HRQoL), functional health status, pain, and ranges of joint motion in patients with acute or subacute JIA. PATIENTS AND METHOD: Randomized (1:1) single-blind parallel controlled clinical trial in 46 patients with acute and subacute JIA between 8-18 years old. Pediatric Quality of Life Inventory 4.0 (PedsQL4.0), Childhood Health Assessment Questionnaire (CHAQ), and 10-joints Global range of motion score (GROMS) assessments were used at the beginning, post treatment, and after three months of follow-up. Patients were randomly assigned to the Watsu group (n = 24) and to the conventional hydrotherapy group (n = 22), participating in 10 sessions of 45 mi nutes once a week. RESULTS: Watsu therapy showed statistically significant improvements in physical functioning-HRQoL (p = 0.041), disability index (p = 0.015), distress index (p = 0.015), and functio nal health status-CHAQ (p = 0.013) after treatment compared to conventional hydrotherapy. Con clusions: Watsu therapy improved HRQoL, pain sensation, and functional health status compared to conventional hydrotherapy. Methodological adaptations are required in future studies to improve the external validity of these results.


Assuntos
Artrite Juvenil/terapia , Hidroterapia/métodos , Qualidade de Vida , Adolescente , Criança , Avaliação da Deficiência , Feminino , Nível de Saúde , Humanos , Masculino , Dor/etiologia , Método Simples-Cego , Resultado do Tratamento
4.
Arthritis rheumatol. (Malden. Online) ; 71(6): 864-877, 6, June 2019.
Artigo em Inglês | BIGG | ID: biblio-1087479

RESUMO

To develop recommendations for the screening, monitoring, and treatment of uveitis in children with juvenile idiopathic arthritis (JIA).Methods. Pediatric rheumatologists, ophthalmologists with expertise in uveitis, patient representatives, and methodologists generated key clinical questions to be addressed by this guideline. This was followed by a system-atic literature review and rating of the available evidence according to the GRADE (Grading of Recommendations Assessment, Development and Evaluation). A group consensus process was used to compose the nal recommendations and grade their strength as conditional or strong. Due to a lack of literature with good quality of evidence, recommendations were formulated on the basis of available evidence and a consensus expert opinion. Regular ophthalmic screening of children with JIA is recom-mended because of the risk of uveitis, and the frequency of screening should be based on individual risk factors.


Assuntos
Artrite Juvenil/diagnóstico , Artrite Juvenil/prevenção & controle , Artrite Juvenil/terapia , Uveíte/diagnóstico , Uveíte/terapia , Antígeno HLA-B27
5.
Minerva Med ; 110(5): 450-454, 2019 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-31142092

RESUMO

Juvenile idiopathic arthritis (JIA) is a chronic systemic inflammatory disease, which affects children and adolescents, characterized by significant differences when compared to inflammatory rheumatisms in adulthood. Today, in a panorama enriched in the last decades with great improvements in the diagnostic and therapeutic field, a far from negligible portion and an increasing number of patients with JIA require the continuation of treatments in adulthood. This specific population of patients, given the high incidence of extra-articular manifestations, residual irreversible disabilities, comorbidities related to an inflammatory process and extended immunosuppressive treatments during the age of development, requires precise attentions in the follow-up and a multidisciplinary approach characterized by different clinical, psychological and social aspects.


Assuntos
Artrite Juvenil/diagnóstico , Adolescente , Amiloidose/etiologia , Artrite Juvenil/complicações , Artrite Juvenil/terapia , Criança , Pré-Escolar , Progressão da Doença , Nanismo/etiologia , Oftalmopatias/etiologia , Humanos , Osteoporose/etiologia , Índice de Gravidade de Doença , Transição para Assistência do Adulto
6.
Pediatr Rheumatol Online J ; 17(1): 20, 2019 May 06.
Artigo em Inglês | MEDLINE | ID: mdl-31060557

RESUMO

BACKGROUND: This study aims to describe current practice in identifying and measuring health care resource use and unit costs in economic evaluations or costing studies of juvenile idiopathic arthritis (JIA). METHODS: A scoping review was conducted (in July 2018) in PubMed and Embase to identify economic evaluations, costing studies, or resource utilization studies focusing on patients with JIA. Only English language peer-reviewed articles reporting primary research were included. Data from all included full-text articles were extracted and analysed to identify the reported health care resource use items. In addition, the data sources used to obtain these resource use and unit costs were identified for all included articles. RESULTS: Of 1176 unique citations identified by the search, 20 full-text articles were included. These involved 4 full economic evaluations, 5 cost-outcome descriptions, 8 cost descriptions, and 3 articles reporting only resource use. The most commonly reported health care resource use items involved medication (80%), outpatient and inpatient hospital visits (80%), laboratory tests (70%), medical professional visits (70%) and other medical visits (65%). Productivity losses of caregivers were much more often incorporated than (future) productivity losses of patients (i.e. 55% vs. 15%). Family borne costs were not commonly captured (ranging from 15% for school costs to 50% for transportation costs). Resource use was mostly obtained from family self-reported questionnaires. Estimates of unit costs were mostly based on reimbursement claims, administrative data, or literature. CONCLUSIONS: Despite some consistency in commonly included health care resource use items, variability remains in including productivity losses, missed school days and family borne costs. As these items likely substantially influence the full cost impact of JIA, the heterogeneity found between the items reported in the included studies limits the comparability of the results. Therefore, standardization of resource use items and unit costs to be collected is required. This standardization will provide guidance to future research and thereby improve the quality and comparability of economic evaluations or costing studies in JIA and potentially other childhood diseases. This would allow better understanding of the burden of JIA, and to estimate how it varies across health care systems.


Assuntos
Artrite Juvenil/terapia , Recursos em Saúde/estatística & dados numéricos , Assistência Ambulatorial/economia , Assistência Ambulatorial/estatística & dados numéricos , Artrite Juvenil/economia , Cuidadores/economia , Cuidadores/estatística & dados numéricos , Criança , Técnicas de Laboratório Clínico/economia , Técnicas de Laboratório Clínico/estatística & dados numéricos , Eficiência , Utilização de Instalações e Serviços , Custos de Cuidados de Saúde/estatística & dados numéricos , Recursos em Saúde/economia , Hospitalização/economia , Hospitalização/estatística & dados numéricos , Humanos
8.
Arthritis Rheumatol ; 71(6): 864-877, 2019 06.
Artigo em Inglês | MEDLINE | ID: mdl-31021511

RESUMO

OBJECTIVE: To develop recommendations for the screening, monitoring, and treatment of uveitis in children with juvenile idiopathic arthritis (JIA). METHODS: Pediatric rheumatologists, ophthalmologists with expertise in uveitis, patient representatives, and methodologists generated key clinical questions to be addressed by this guideline. This was followed by a systematic literature review and rating of the available evidence according to the GRADE (Grading of Recommendations Assessment, Development and Evaluation) methodology. A group consensus process was used to compose the final recommendations and grade their strength as conditional or strong. RESULTS: Due to a lack of literature with good quality of evidence, recommendations were formulated on the basis of available evidence and a consensus expert opinion. Regular ophthalmic screening of children with JIA is recommended because of the risk of uveitis, and the frequency of screening should be based on individual risk factors. Regular ophthalmic monitoring of children with uveitis is recommended, and intervals should be based on ocular examination findings and treatment regimen. Ophthalmic monitoring recommendations were strong primarily because of concerns of vision-threatening complications of uveitis with infrequent monitoring. Topical glucocorticoids should be used as initial treatment to achieve control of inflammation. Methotrexate and the monoclonal antibody tumor necrosis factor inhibitors adalimumab and infliximab are recommended when systemic treatment is needed for the management of uveitis. The timely addition of nonbiologic and biologic drugs is recommended to maintain uveitis control in children who are at continued risk of vision loss. CONCLUSION: This guideline provides direction for clinicians and patients/parents making decisions on the screening, monitoring, and management of children with JIA and uveitis, using GRADE methodology and informed by a consensus process with input from rheumatology and ophthalmology experts, current literature, and patient/parent preferences and values.


Assuntos
Antirreumáticos/uso terapêutico , Artrite Juvenil/terapia , Glucocorticoides/uso terapêutico , Metotrexato/uso terapêutico , Uveíte/tratamento farmacológico , Adalimumab/uso terapêutico , Administração Oftálmica , Artrite Juvenil/complicações , Humanos , Infliximab/uso terapêutico , Programas de Rastreamento , Uveíte/diagnóstico , Uveíte/etiologia
9.
Arthritis Care Res (Hoboken) ; 71(6): 717-734, 2019 06.
Artigo em Inglês | MEDLINE | ID: mdl-31021516

RESUMO

OBJECTIVE: To develop treatment recommendations for children with juvenile idiopathic arthritis manifesting as non-systemic polyarthritis, sacroiliitis, or enthesitis. METHODS: The Patient/Population, Intervention, Comparison, and Outcomes (PICO) questions were developed and refined by members of the guideline development teams. A systematic review was conducted to compile evidence for the benefits and harms associated with treatments for these conditions. GRADE (Grading of Recommendations Assessment, Development and Evaluation) methodology was used to rate the quality of evidence. A group consensus process was conducted among the Voting Panel to generate the final recommendations and grade their strength. A Parent and Patient Panel used a similar consensus approach to provide patient/caregiver preferences for key questions. RESULTS: Thirty-nine recommendations were developed (8 strong and 31 conditional). The quality of supporting evidence was very low or low for 90% of the recommendations. Recommendations are provided for the use of nonsteroidal antiinflammatory drugs, disease-modifying antirheumatic drugs, biologics, and intraarticular and oral glucocorticoids. Recommendations for the use of physical and occupational therapy are also provided. Specific recommendations for polyarthritis address general medication use, initial and subsequent treatment, and adjunctive therapies. Good disease control, with therapeutic escalation to achieve low disease activity, was recommended. The sacroiliitis and enthesitis recommendations primarily address initial therapy and adjunctive therapies. CONCLUSION: This guideline provides direction for clinicians, caregivers, and patients making treatment decisions. Clinicians, caregivers, and patients should use a shared decision-making process that accounts for patients' values, preferences, and comorbidities. These recommendations should not be used to limit or deny access to therapies.


Assuntos
Antirreumáticos/uso terapêutico , Artrite Juvenil/terapia , Entesopatia/terapia , Terapia Ocupacional , Modalidades de Fisioterapia , Reumatologia/normas , Sacroileíte/terapia , Anti-Inflamatórios não Esteroides/uso terapêutico , Antirreumáticos/efeitos adversos , Artrite Juvenil/diagnóstico , Artrite Juvenil/epidemiologia , Produtos Biológicos/uso terapêutico , Consenso , Entesopatia/diagnóstico , Entesopatia/epidemiologia , Glucocorticoides/uso terapêutico , Humanos , Fatores de Risco , Sacroileíte/diagnóstico , Sacroileíte/epidemiologia , Resultado do Tratamento
10.
Arthritis Rheumatol ; 71(6): 846-863, 2019 06.
Artigo em Inglês | MEDLINE | ID: mdl-31021537

RESUMO

OBJECTIVE: To develop treatment recommendations for children with juvenile idiopathic arthritis manifesting as non-systemic polyarthritis, sacroiliitis, or enthesitis. METHODS: The Patient/Population, Intervention, Comparison, and Outcomes (PICO) questions were developed and refined by members of the guideline development teams. A systematic review was conducted to compile evidence for the benefits and harms associated with treatments for these conditions. GRADE (Grading of Recommendations Assessment, Development and Evaluation) methodology was used to rate the quality of evidence. A group consensus process was conducted among the Voting Panel to generate the final recommendations and grade their strength. A Parent and Patient Panel used a similar consensus approach to provide patient/caregiver preferences for key questions. RESULTS: Thirty-nine recommendations were developed (8 strong and 31 conditional). The quality of supporting evidence was very low or low for 90% of the recommendations. Recommendations are provided for the use of nonsteroidal antiinflammatory drugs, disease-modifying antirheumatic drugs, biologics, and intraarticular and oral glucocorticoids. Recommendations for the use of physical and occupational therapy are also provided. Specific recommendations for polyarthritis address general medication use, initial and subsequent treatment, and adjunctive therapies. Good disease control, with therapeutic escalation to achieve low disease activity, was recommended. The sacroiliitis and enthesitis recommendations primarily address initial therapy and adjunctive therapies. CONCLUSION: This guideline provides direction for clinicians, caregivers, and patients making treatment decisions. Clinicians, caregivers, and patients should use a shared decision-making process that accounts for patients' values, preferences, and comorbidities. These recommendations should not be used to limit or deny access to therapies.


Assuntos
Anti-Inflamatórios não Esteroides/uso terapêutico , Antirreumáticos/uso terapêutico , Artrite Juvenil/terapia , Entesopatia/terapia , Glucocorticoides/uso terapêutico , Sacroileíte/terapia , /uso terapêutico , Artrite/terapia , Humanos , Injeções Intra-Articulares , Terapia Ocupacional , Modalidades de Fisioterapia
12.
Clin Rheumatol ; 38(8): 2219-2226, 2019 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-30834997

RESUMO

OBJECTIVES: To assess the validity, reliability, comprehensibility, and responsiveness to change of an illustrated child/parent multidimensional patient-reported outcome measures (PROMs) questionnaire which can assess construct outcome measures of children with juvenile inflammatory arthritis. METHODS: A total of 122 children with juvenile idiopathic arthritis were included in this work in a multicenter study. The questionnaire included seven categories: (1) functional ability; (2) health-related quality of life; (3) disease activity measures: pain, global assessment, fatigue, and morning stiffness; (4) self-reported joint tenderness; (5) current medication, side effects, and adherence to therapy; (6) comorbidities; and (7) patient motivation. All the items were supported by illustrations to provide children with a visual impression of what was meant by the questions. The questionnaire has parent and patient versions. The disease activity status was assessed using JADAS-27. RESULTS: The questionnaire was reliable as demonstrated by a high-standardized alpha (0.890-0.978). The questionnaire items correlated significantly (p < 0.01) with clinical parameters of disease activity. The patient-reported tender joints correlated significantly with the physician's scores (0.842). Changes in functional disability, quality of life, and the motivation score showed significant variation (p < 0.01) with disease activity status in response to therapy. The illustrated PROMs questionnaire showed also a high degree of comprehensibility (9.6). CONCLUSIONS: Integrating PROMs into standard clinical practice is feasible and applicable. The illustrated questionnaire was valid and reliable. It provides an informative, quantitative measure for the disease activity score set data, and in the meantime, facilitates the assessment of the children's adherence to therapy, comorbidities, and motivation on an individual basis.


Assuntos
Artrite Juvenil/terapia , Medidas de Resultados Relatados pelo Paciente , Reumatologia/normas , Adolescente , Artrite Juvenil/psicologia , Criança , Pré-Escolar , Avaliação da Deficiência , Feminino , Humanos , Articulações/fisiopatologia , Masculino , Medição da Dor , Pais , Assistência Centrada no Paciente , Estudos Prospectivos , Psicometria , Qualidade de Vida , Reprodutibilidade dos Testes , Autorrelato , Índice de Gravidade de Doença , Inquéritos e Questionários , Resultado do Tratamento
13.
Curr Opin Ophthalmol ; 30(3): 179-186, 2019 May.
Artigo em Inglês | MEDLINE | ID: mdl-30844943

RESUMO

PURPOSE OF REVIEW: The aim of this review is to highlight recent changes in the treatment of juvenile idiopathic arthritis (JIA) - associated uveitis in the era of biologics. RECENT FINDINGS: Early introduction of steroid-sparing therapies is paramount for appropriate management. Biologic therapies have improved the therapeutic management of JIA-uveitis and adalimumab is currently approved for pediatric-onset noninfectious chronic anterior uveitis with an inadequate response to topical steroids and methotrexate. Recent studies suggest that ocular complications in JIA-uveitis are less frequent compared with previous publications. However, patients with JIA-uveitis seem to be particularly dependent on classical immunosuppressive drugs or biologics. Indications for primary lens implantation have expanded considerably with the evolution of materials and better control of inflammation with biologics. The rate of serious adverse events related to new therapeutic approaches seem acceptable, however longer term follow-up is necessary. SUMMARY: Improvement in the initial screening and improved inflammation control with biologics has considerably reduced the potentially sight-threatening prognosis of JIA-uveitis.


Assuntos
Artrite Juvenil/terapia , Terapia Biológica , Uveíte/terapia , Adalimumab/uso terapêutico , Artrite Juvenil/complicações , Artrite Juvenil/diagnóstico , Criança , Humanos , Metotrexato/uso terapêutico , Uveíte/diagnóstico , Uveíte/etiologia
14.
Front Immunol ; 10: 46, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30740105

RESUMO

Regulatory T cells (Tregs) are believed to be dysfunctional in autoimmunity. Juvenile idiopathic arthritis (JIA) and juvenile dermatomyositis (JDM) result from a loss of normal immune regulation in specific tissues such as joints or muscle and skin, respectively. Here, we discuss recent findings in regard to Treg biology in oligo-/polyarticular JIA and JDM, as well as what we can learn about Treg-related disease mechanism, treatment and biomarkers in JIA/JDM from studies of other diseases. We explore the potential use of Treg immunoregulatory markers and gene signatures as biomarkers for disease course and/or treatment success. Further, we discuss how Tregs are affected by several treatment strategies already employed in the therapy of JIA and JDM and by alternative immunotherapies such as anti-cytokine or co-receptor targeting. Finally, we review recent successes in using Tregs as a treatment target with low-dose IL-2 or cellular immunotherapy. Thus, this mini review will highlight our current understanding and identify open questions in regard to Treg biology, and how recent findings may advance biomarkers and new therapies for JIA and JDM.


Assuntos
Artrite Juvenil/imunologia , Artrite Juvenil/terapia , Dermatomiosite/imunologia , Dermatomiosite/terapia , Imunoterapia Adotiva/efeitos adversos , Linfócitos T Reguladores/imunologia , Animais , Anticorpos Monoclonais Humanizados/farmacologia , Anticorpos Monoclonais Humanizados/uso terapêutico , Autoimunidade , Biomarcadores , Citocinas/antagonistas & inibidores , Humanos , Camundongos , Resultado do Tratamento
15.
Ital J Pediatr ; 45(1): 14, 2019 Jan 14.
Artigo em Inglês | MEDLINE | ID: mdl-30642364

RESUMO

BACKGROUND: To explore the effects of extracellular histones released by activated neutrophils on systemic-onset juvenile idiopathic arthritis (SoJIA), and to study the change of serum histone level between the active and remissive stage of SoJIA, then to clarify the role of serum histone in the pathogenesis of SoJIA. METHODS: Twenty-six patients with SoJIA were recruited, and clinical informations were collected, and the serum histone was detected by ELISA. While neutrophils from normal children were incubated with the serum from the patients with SoJIA, also including incubated with FeCL3 and histone, the extracellular histone was detected, respectively; heparin was added to the above-mentioned groups to observe the changes of extracellular histone levels. The proportions of neutrophils, which released NETs, were calculated by confocal microscope. RESULTS: The levels of serum histones in active SoJIA group (0.90 ± 0.90) were significantly higher than in remissive SoJIA group (0.17 ± 0.10) (P = 0.0009), and also higher than in control group (0.14 ± 0.09) (P = 0.246). Histone affects on clinical manifestations (including fever, rash, joint pain, liver and spleen enlargement, and serositis), except for joint pain. The proportions of neutrophils releasing NETs, that neutrophils were incubated with the serum from active SoJIA group, were 31.93% significantly higher than 12.32% from remissive SoJIA group (P < 0.0001). The proportions of neutrophils releasing NETs, that neutrophils were incubated with different concentration FeCl3 or with different concentration histones respectively, were positively correlated with the concentration of incubation; while heparins were added, NETs from neutrophils could be reduced effectively. CONCLUSIONS: The level of serum histone is positively correlated with the activity of SoJIA. Serum histone may be from NETs, which were released by activated neutrophils. Free iron can activate neutrophils to produce NETs, which may release histones, and histones can further promote NETs to be released, that results in a positive feedback loop of histones, and that may be one of the pathogenesis of acute SoJIA or MAS secondary to SoJIA. Histones maybe play one of important roles in the pathogenesis of SoJIA. Heparin can act on histones to prevent histone-induced inflammation. TRIAL REGISTRATION: ChiCTR-OOC-15006228. Registered 9 April 2015, http://www.chictr.org.cn/showproj.aspx?proj=10752.


Assuntos
Artrite Juvenil/sangue , Artrite Juvenil/etiologia , Histonas/sangue , Adolescente , Artrite Juvenil/terapia , Estudos de Casos e Controles , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Neutrófilos , Indução de Remissão
16.
Asian Pac J Allergy Immunol ; 37(2): 116-122, 2019 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-29888930

RESUMO

BACKGROUND: Interleukin (IL)-6 is the main proinflammatory cytokine in systemic juvenile idiopathic arthritis (SJIA). OBJECTIVE: To determine if serial changes in serum IL-6 levels can predict outcomes of SJIA patients. METHODS: This was a retrospective cohort study. Medical records of patients aged 2-19 years with active SJIA between January 2012 and February 2014 were reviewed. Baseline characteristics were recorded at enrollment. Serum IL-6 levels were measured at enrollment and at 2-4 weeks, 6-8 weeks, 3 months, and 6 months thereafter. Treatment response and clinical remission were assessed after 2 years of follow-up. RESULTS: Of the 35 patients with active SJIA, 16 were in remission at the end of the study. IL-6 levels in the remission group returned to normal within 6 months, whereas they remained persistently high in the non-remission group. At the 3-month follow-up, patients were assigned to groups A and B based on reductions in serum IL-6 levels of >50% and ≤50%, respectively. At the end of the study, more patients in group A (72.2%) than in group B (17.6%) achieved clinical remission (p < 0.05). After multivariate analysis, a >50% reduction in serum IL-6 levels at the 3-month follow-up visit was a predictor of clinical remission at 2 years (odds ratio 22.74, 95% confidence intervals 2.16-239.85, p < 0.01). CONCLUSIONS: An early reduction in serum IL-6 levels is significantly associated with clinical remission at 2 years in SJIA patients. Monitoring of serial changes in serum IL-6 levels is beneficial for predicting clinical remission.


Assuntos
Artrite Juvenil/sangue , Artrite Juvenil/diagnóstico , Biomarcadores , Interleucina-6/sangue , Adolescente , Artrite Juvenil/terapia , Criança , Pré-Escolar , Diagnóstico Precoce , Feminino , Seguimentos , Humanos , Estimativa de Kaplan-Meier , Masculino , Razão de Chances , Prognóstico , Indução de Remissão , Estudos Retrospectivos , Índice de Gravidade de Doença , Adulto Jovem
17.
Mod Rheumatol ; 29(1): 41-59, 2019 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-30126298

RESUMO

Juvenile idiopathic arthritis (JIA) is the most common disease in pediatric rheumatism. There is no specific symptom or examination finding for JIA, and the diagnosis is made by exclusion and differentiation. Because non-pediatric rheumatologists are sometimes involved in medical care, 'proposal for JIA guidance on diagnosis and treatment for primary care pediatricians and non-pediatric rheumatologists' was first published in 2007. In these 10 years, a number of new findings on pathophysiology and treatment of JIA have been published; therefore, we propose this guidance of 2018th edition aiming at updating and standardization of JIA medical care in Japan. This edition included the management of uveitis, macrophage activation syndrome, infectious diseases before and during treatment. Moreover, details of biologics are also described. Although this guidance is tailored to adaptation of examinations and drugs, we do not purpose to limit the physicians' discretion in clinical practice. This guidance should be viewed as recommendations and be individualized according to the condition of the patient. We hope that medical care for JIA will advance and more patients will get benefit based on this guidance. Then, further revisions are needed due to changes in future conditions.


Assuntos
Artrite Juvenil , Produtos Biológicos , Doenças Transmissíveis , Síndrome de Ativação Macrofágica , Atenção Primária à Saúde , Uveíte , Adulto , Artrite Juvenil/complicações , Artrite Juvenil/diagnóstico , Artrite Juvenil/epidemiologia , Artrite Juvenil/terapia , Produtos Biológicos/classificação , Produtos Biológicos/farmacologia , Criança , Doenças Transmissíveis/diagnóstico , Doenças Transmissíveis/etiologia , Doenças Transmissíveis/terapia , Humanos , Japão , Síndrome de Ativação Macrofágica/diagnóstico , Síndrome de Ativação Macrofágica/etiologia , Síndrome de Ativação Macrofágica/terapia , Padrões de Prática Médica , Atenção Primária à Saúde/métodos , Atenção Primária à Saúde/normas , Uveíte/diagnóstico , Uveíte/etiologia , Uveíte/terapia
18.
BMC Med Ethics ; 19(1): 96, 2018 12 20.
Artigo em Inglês | MEDLINE | ID: mdl-30572875

RESUMO

BACKGROUND: Genuine uncertainty on superiority of one intervention over the other is called equipoise. Physician-investigators in randomized controlled trials (RCT) need equipoise at least in studies with more than minimal risks. Ideally, this equipoise is also present in patient-participants. In pediatrics, data on equipoise are lacking. We hypothesize that 1) lack of equipoise at enrolment among parents may reduce recruitment; 2) lack of equipoise during participation may reduce retention in patients assigned to a less favoured treatment-strategy. METHODS: We compared preferences of parents/patients at enrolment, documented by a questionnaire (phase 1), with preferences developed during follow-up by an interview-study (phase 2) to investigate equipoise of child-participants and parents in the BeSt-for-Kids-study (NTR 1574). This trial in new-onset Juvenile Idiopathic Arthritis-patients consists of three strategies. One strategy comprises initial treatment with a biological disease-modifying-antirheumatic-drug (DMARD), currently not standard-of-care. Semi-structured interviews were conducted with 23 parents and 7 patients, median 11 months after enrolment. RESULTS: Initially most parents and children were not in equipoise. Parents/patients who refused participation, regularly declined due to specific preferences. Many participating families preferred the biological-first-strategy. They participated to have a chance for this initial treatment, and would even consider stopping trial-participation when not randomized for it. Their conviction of superiority of the biological-first strategy was based on knowledge from internet and close relations. According to four parents, the physician-investigator preferred the biological-first-strategy, but the majority (n = 19) stated that she had no preferred strategy. In phase 2, preferences tended to change to the treatment actually received. CONCLUSIONS: Lack of equipoise during enrolment did not reduce study recruitment, mainly due to the fact that preferred treatment was only available within the study. Still, when developing a trial it is important to evaluate whether the physicians' research question is in line with preferences of the patient-group. By exploring so-called 'informed patient-group'-equipoise, successful recruitment may be enhanced and bias avoided. In our study, lack of equipoise during trial-participation did not reduce retention in those assigned to a less favoured option. We observed a change for preference towards treatment actually received, possibly explained by comparable outcomes in all three arms.


Assuntos
Artrite Juvenil/tratamento farmacológico , Pais/psicologia , Preferência do Paciente/psicologia , Ensaios Clínicos Controlados Aleatórios como Assunto/ética , Equipolência Terapêutica , Adolescente , Adulto , Artrite Juvenil/terapia , Criança , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Ensaios Clínicos Controlados Aleatórios como Assunto/métodos , Ensaios Clínicos Controlados Aleatórios como Assunto/psicologia , Método Simples-Cego , Inquéritos e Questionários
19.
Curr Sports Med Rep ; 17(12): 425-432, 2018 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-30531459

RESUMO

Children with chronic medical conditions face many challenges when considering sport participation. Compared with their healthy counterparts, they are often discouraged from physical activity or sports participation because of real or perceived limitations imposed by their condition. Prescribed exercise should be based on the demands of the sport, the effect of the disease on performance, and the potential for exercise-induced acute or chronic worsening of the illness or disability. This article will focus on several examples of chronic medical conditions and the clinician's role in providing advice about sport participation.


Assuntos
Doença Crônica/terapia , Pessoas com Deficiência , Exercício , Promoção da Saúde/métodos , Artrite Juvenil/fisiopatologia , Artrite Juvenil/terapia , Transtorno do Deficit de Atenção com Hiperatividade/fisiopatologia , Transtorno do Deficit de Atenção com Hiperatividade/terapia , Transtorno do Espectro Autista/fisiopatologia , Transtorno do Espectro Autista/terapia , Paralisia Cerebral/fisiopatologia , Paralisia Cerebral/terapia , Criança , Fibrose Cística/fisiopatologia , Fibrose Cística/terapia , Epilepsia/fisiopatologia , Epilepsia/terapia , Hemofilia A/fisiopatologia , Hemofilia A/terapia , Humanos , Doenças Neuromusculares/fisiopatologia , Doenças Neuromusculares/terapia , Traço Falciforme/fisiopatologia , Traço Falciforme/terapia , Medicina Esportiva
20.
Ital J Pediatr ; 44(1): 139, 2018 Nov 20.
Artigo em Inglês | MEDLINE | ID: mdl-30458837

RESUMO

BACKGROUND: Juvenile idiopathic arthritis (JIA) is the most common pediatric chronic rheumatic disease, which requires constant follow-up over the years, due to relapses during its progression. To maintain a good quality of life, it is important to limit admissions as far as possible. With the development of a Diagnostic Therapeutic Assistance Pathway (DTAP), we aim to select patients with suitable clinical conditions to be moved from routine hospital management to day care or outpatient treatment, evaluating the number of patients to whom this would apply. METHODS: Monocentric study regarding admissions for JIA between 2014 and 2016 in a Pediatric Unit of a university hospital in Milan. Through an analysis of the medical records, relevant information was extracted and collected in a Microsoft™ Excel database; starting from the data collected during the first year, a DTAP was prepared for patients with active arthritis and appropriate clinical conditions. RESULTS: The study includes data from 223 JIA hospitalization cases involving 127 patients. Applying DTAP criteria, 32% patients would have avoided admissions and 23% would have been admitted less frequently. The data concerning the activities of the Unit for JIA patients showed a relevant drop in the number of hospitalizations since 2015, from 89 in 2014 to 66 and 68 in 2015 and 2016 respectively. CONCLUSION: The opportunity offered by DTAP, has suggested feasible changes in hospitalization management and it's use would promote the possibility of treating the children without hospitalization, or minimizing it. In conclusion DTAP application is a priority for the continuous improvement of clinical practice and quality of life for patients and their families.


Assuntos
Artrite Juvenil/terapia , Procedimentos Clínicos/organização & administração , Adolescente , Assistência Ambulatorial , Artrite Juvenil/epidemiologia , Criança , Pré-Escolar , Feminino , Hospitalização , Hospitais Universitários , Humanos , Itália/epidemiologia , Masculino
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