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1.
J Pediatr ; 271: 114046, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38582149

RESUMO

OBJECTIVES: To understand the burden associated with pediatric chronic pain (CP) on the health care system compared with other costly chronic diseases prior to subspecialty care. STUDY DESIGN: In this retrospective cohort study, we assessed all-cause health care utilization and direct health care costs associated with pediatric CP (n = 91) compared with juvenile arthritis (n = 135), inflammatory bowel disease (n = 90), type 1 diabetes (n = 475) or type 2 diabetes (n = 289), anxiety (n = 7193), and controls (n = 273) 2 and 5 years prior to patients entering subspecialty care in Manitoba, Canada. Linked data from physician encounters, emergency department visits, hospitalizations, and prescriptions were extracted from administrative databases. Differences in health care utilization and direct health care costs associated with CP vs the other conditions were tested using negative binomial and zero-inflated negative binomial regression models, respectively. RESULTS: After adjustment for age at diagnosis, sex, location of residence, and socioeconomic status, CP continued to be associated with the highest number of consulted physicians and subspecialists and the highest number of physician billings compared with all other conditions (P < .01, respectively). CP was significantly associated with higher physician costs than juvenile arthritis, inflammatory bowel disease, type 1 diabetes, type 2 diabetes, or controls (P < .01, respectively); anxiety was associated with the highest physician and prescription costs among all cohorts (P < .01, respectively). CONCLUSION: Compared with chronic inflammatory and endocrinologic conditions, pediatric CP and anxiety were associated with substantial burden on the health care system prior to subspecialty care, suggesting a need to assess gaps and resources in the management of CP and mental health conditions in the primary care setting.


Assuntos
Dor Crônica , Custos de Cuidados de Saúde , Aceitação pelo Paciente de Cuidados de Saúde , Humanos , Criança , Masculino , Feminino , Estudos Retrospectivos , Custos de Cuidados de Saúde/estatística & dados numéricos , Adolescente , Dor Crônica/economia , Dor Crônica/terapia , Pré-Escolar , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Diabetes Mellitus Tipo 1/terapia , Diabetes Mellitus Tipo 1/economia , Estudos de Coortes , Doença Crônica , Manitoba , Doenças Inflamatórias Intestinais/terapia , Doenças Inflamatórias Intestinais/economia , Diabetes Mellitus Tipo 2/terapia , Diabetes Mellitus Tipo 2/economia , Artrite Juvenil/economia , Artrite Juvenil/terapia , Ansiedade/epidemiologia
2.
Rheumatology (Oxford) ; 63(3): 619-629, 2024 Mar 01.
Artigo em Inglês | MEDLINE | ID: mdl-37774006

RESUMO

OBJECTIVES: We aimed to comprehensively analyse the available literature to identify the unmet requirements in transitional programs tailored specifically for patients diagnosed with JIA. METHODS: According to published guidance on narrative reviews, a systematic review of the literature on transitional care in rheumatology was conducted. Pertinent documents were collected from reputable databases, such as Web of Science, Scopus, and MEDLINE/PubMed. The search encompassed literature published from the inception of each database until January 2023. RESULTS: In this study, a comprehensive analysis of the findings of 34 studies was conducted. Among these, 12 studies focused on assessing the readiness of adolescents and young adults diagnosed with JIA. Additionally, 18 studies examined the effectiveness of structured transition programs in terms of adherence and satisfaction. Finally, 4 studies investigated disease-related outcomes in this population. CONCLUSION: The need for transitioning children with rheumatic diseases to adult rheumatology services for continued care is clearly evident. However, the absence of established best practice guidelines presents a challenge in facilitating this transition effectively. Although several scoring systems have been proposed to ensure organized and seamless transfers, a consensus has not yet been reached. Furthermore, the socio-economic and cultural variations across countries further complicate the development of universal guidelines for transitioning children with rheumatic diseases. To address these concerns, our objective in conducting this literature review was to emphasize the significance of this issue and identify the specific requirements based on the unmet needs in the transition process.


Assuntos
Artrite Juvenil , Doenças Reumáticas , Cuidado Transicional , Adolescente , Criança , Humanos , Adulto Jovem , Artrite Juvenil/terapia , Consenso , Bases de Dados Factuais
3.
Curr Rheumatol Rep ; 26(6): 214-221, 2024 06.
Artigo em Inglês | MEDLINE | ID: mdl-38466514

RESUMO

PURPOSE OF REVIEW: This critical review begins by presenting the history of Juvenile Idiopathic Arthritis (JIA) management. To move the conversation forward in addressing the current shortcomings that exist in the clinical management of children living with JIA, we argue that to date, the advancement of successful treatments for JIA has been historically slow. Factors implicated in this situation include a lack of rigorous research, JIA being considered a rare disease, and JIA's idiopathic and complex pathophysiology. RECENT FINDINGS: Despite the well-intended legislative changes to increase paediatric research, and the major advancements seen in molecular medicine over the last 30 years, globally, paediatric rheumatology services are still failing to meet the current benchmarks of best practice. Provoking questions on how the longstanding health care disparities of poor access and delayed treatment for children living with JIA can be improved, to improve healthcare outcomes. Globally, paediatric rheumatology services are failing to meet the current benchmarks of best practice. Raising awareness of the barriers hindering JIA management is the first step in reducing the current health inequalities experienced by children living with JIA. Action must be taken now, to train and well-equip the paediatric rheumatology interdisciplinary workforce. We propose, a resource-efficient way to improve the quality of care provided could be achieved by embedding digital health into clinical practice, to create an integrative care model between the children, general practice and the paediatric rheumatology team. To improve fragmented service delivery and the coordination of interdisciplinary care, across the healthcare system.


Assuntos
Artrite Juvenil , Benchmarking , Equidade em Saúde , Reumatologia , Humanos , Artrite Juvenil/terapia , Criança , Disparidades em Assistência à Saúde , Tecnologia Digital , Saúde Digital
4.
Intern Med J ; 53(1): 46-50, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-34498355

RESUMO

BACKGROUND: Disease activity in juvenile idiopathic arthritis (JIA) commonly persists into adulthood. Transfer of JIA patients to adult healthcare services can be challenging, with prior studies showing poor rates of success. AIMS: This audit sought to examine characteristics of patients undergoing transfer of care within the rheumatology unit at the Royal Children's Hospital in Melbourne, with the aim of identifying areas for improvement. Specifically, we sought to determine the rate at which confirmation of established care with an adult service (confirmed transfer of care) was documented in the patient chart. METHODS: Patients with a diagnosis of JIA who turned 18 years of age between 2012 and 2019 were identified. A chart review was undertaken to collect relevant data. RESULTS: One hundred and seventy-seven patients were identified. In all, 64% (114/177) were referred for adult care. The commonest JIA subtypes referred were seronegative polyarticular (35/114; 30.7%) and oligoarticular JIA (22/114; 19.3%). Documentation of confirmed transfer of care occurred in 62.3% (71/114), with correspondence received from adult services in 49.1% (56/114). There was no difference in rate of return correspondence from public versus private providers (45% vs 53.8%; P = 0.38). The use of 'backstop appointments' was more likely in those with confirmed transfer of care (66% vs 30%; P = 0.0002). CONCLUSIONS: Lack of confirmed transfer of care for JIA patients is common and carries a risk of suboptimal outcomes. Strategies to improve communication with adult services, the routine use of 'backstop' appointments and vigilance regarding potential loss to follow up at the time of transfer would minimise this risk.


Assuntos
Artrite Juvenil , Centros de Atenção Terciária , Transição para Assistência do Adulto , Adolescente , Humanos , Artrite Juvenil/diagnóstico , Artrite Juvenil/terapia , Austrália , Unidades Hospitalares , Hospitais Pediátricos , Reumatologia , Transição para Assistência do Adulto/estatística & dados numéricos
5.
Pediatr Rev ; 44(3): 153-164, 2023 Mar 01.
Artigo em Inglês | MEDLINE | ID: mdl-36854831

RESUMO

Musculoskeletal complaints are common among children in the primary care setting. Joint pain can be categorized as either inflammatory or noninflammatory (also known as mechanical), and differentiating between these 2 categories affects a physician's differential diagnosis and plan for evaluation. Patients with inflammatory arthritis will frequently present to the primary care physician with musculoskeletal complaints. Specific features in the history and physical examination distinguish juvenile idiopathic arthritis (JIA) from other musculoskeletal etiologies. (1)JIA is the most common cause of inflammatory joint pain in children younger than 16 years, with a variable worldwide incidence; in Europe and North America, the incidence is approximately 7.8 to 8.3 per 1,000, with prevalence rates between 12.8 and 45 per 100,000. (2) It is thought that as many as 8 million children in the world have chronic arthritis. (2) Given its prevalence, it is important for the primary care physician to be able to appropriately recognize this condition and in doing so prevent a delay in diagnosis and management. Arthritis is a common cause of disability in children, and complications of JIA can be severe. Many therapies used in JIA have adverse effects and contraindications (specifically vaccinations and teratogen exposure) that require recognition by the primary care physician. This article discusses the differences between inflammatory and noninflammatory joint pain, the diagnosis and various categories of JIA, long-term outcomes and complications associated with JIA, and the general management of JIA with special emphasis on adverse effects and contraindications of therapies.


Assuntos
Artrite Juvenil , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos , Clínicos Gerais , Criança , Humanos , Artrite Juvenil/diagnóstico , Artrite Juvenil/epidemiologia , Artrite Juvenil/terapia , Artralgia , Dor
6.
Pediatr Rev ; 44(10): 565-577, 2023 Oct 01.
Artigo em Inglês | MEDLINE | ID: mdl-37777651

RESUMO

Juvenile idiopathic arthritis (JIA) comprises a group of heterogenous disorders characterized by childhood-onset chronic joint inflammation. It is the most common rheumatologic disease in the pediatric population and an important cause of chronic illness in children. Early recognition and treatment are vital to prevent sequelae of uncontrolled inflammation on the developing skeleton. JIA can have significant complications that general pediatricians should be aware of, especially uveitis, which can be insidious and asymptomatic in very young children, and macrophage activation syndrome, which can be life-threatening if not recognized and appropriately treated. Although advances have been made in the past few decades, the etiology of JIA remains incompletely understood. Efforts are underway to refine the classification of JIA. The currently accepted classification scheme identifies subsets of JIA that are important clinically in terms of prognosis and tailoring treatment approaches. However, it is limited in identifying homogenous groups of children with early childhood onset and antinuclear antibody positivity, which may have different pathogenic mechanisms that could be important in developing more targeted and effective treatment approaches in the future. Treatment strategies for JIA have changed significantly in recent years with the availability of multiple newer targeted therapies, often modeled after medications used in adult-onset forms of arthritis. These treatments, and likely many others to come, have markedly improved symptom control and reduced complications in patients with JIA.


Assuntos
Artrite Juvenil , Uveíte , Adulto , Humanos , Criança , Pré-Escolar , Artrite Juvenil/diagnóstico , Artrite Juvenil/terapia , Artrite Juvenil/complicações , Uveíte/diagnóstico , Uveíte/tratamento farmacológico , Uveíte/etiologia , Prognóstico , Resultado do Tratamento , Inflamação
7.
J Clin Rheumatol ; 29(5): 235-239, 2023 Aug 01.
Artigo em Inglês | MEDLINE | ID: mdl-37221634

RESUMO

BACKGROUND: The transition from pediatric to adult care is a critical time when adolescent patients and their families face many challenges. This period can be associated with an increase in disease-related morbidity and mortality. The aim of our study is to identify gaps in transition-related care to help guide areas for improvement. METHODS: Patients (14-19 years) with juvenile idiopathic arthritis or systemic lupus erythematosus and one of their parents were recruited from the McMaster Rheumatology Transition Clinic. Both were asked to complete the Mind the Gap questionnaire, a validated tool to assess experience and satisfaction with transition care in a clinic setting. The questionnaire, addressing 3 important domains of care: management of the environment, provider characteristics, and process issues, was completed twice-once based on their current clinical experience and again based on their ideal clinical encounter. Positive scores suggest current care is less than ideal; negative scores suggest current care exceeds the ideal experience. RESULTS: Most patients (n = 65, 68% female) had a diagnosis of juvenile idiopathic arthritis (87%). Patients identified mean gap scores between 0.2 and 0.3 for each domain of Mind the Gap, with female patients having higher gap scores compared with male patients. Parents (n = 51) identified gap scores between 0.0 and 0.3. Patients identified process issues as having the largest gap, whereas parents identified management of the environment as having the largest gap. CONCLUSIONS: We identified several gaps in transition clinic care relative to what patients and parents identify as ideal. These can be used to improve the rheumatology transition care that is currently being provided.


Assuntos
Artrite Juvenil , Reumatologia , Transição para Assistência do Adulto , Adulto , Humanos , Masculino , Criança , Adolescente , Feminino , Artrite Juvenil/diagnóstico , Artrite Juvenil/terapia , Satisfação do Paciente , Pais
8.
Lupus ; 31(4): 443-456, 2022 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-35264025

RESUMO

OBJECTIVES: To investigate the perceptions and acceptability of a home-based exercise intervention in systemic lupus erythematosus (JSLE) and juvenile idiopathic arthritis (JIA) adolescent patients during the COVID-19 pandemic, and to explore the effects of the intervention on health-related quality of life (HRQoL), sleep quality, and mental health conditions parameters. METHODS: This was a randomized controlled trial of a 12-week, home-based exercise training program conducted between October and December 2020. During this period, social distancing measures were in place in Brazil to contain the spread of COVID-19. Adolescent patients diagnosed with JSLE and JIA participated in the study. Health-related qualitative and quantitative data were collected before and after the follow-up. RESULTS: 21 JSLE patients and 30 JIA patients were analyzed. Six themes emerged from patients' feedback: 1) Suitability of the home-based format; 2) Appropriate trainer supervision, 3) Motivators and facilitators for the program; 4) Barriers to the program; 5) Health benefits; 6) Patients' suggestions to improve the program. Overall, data indicated that the intervention showed good acceptability and elicited improvements in the perceived HRQoL and fatigue in JIA and JSLE patients during the pandemic. However, further quantitative analyses with validated HRQoL, sleep quality, and mental health conditions instruments did not capture these benefits (p>0.05). CONCLUSION: Our main findings based on in-depth qualitative assessments suggest that a home-based exercise training program was suitable and well-accepted by adolescents with JSLE and JIA during the COVID-19 pandemic. Nonetheless, adherence was not high, particularly among JIA patients, suggesting that facilitators and barriers identified in the current study should be explored to improve the quality of new home-based exercise programs implementation, particularly in a future emerging crisis.


Assuntos
Artrite Juvenil/terapia , COVID-19 , Terapia por Exercício/métodos , Lúpus Eritematoso Sistêmico/terapia , Aceitação pelo Paciente de Cuidados de Saúde , Adolescente , Brasil , Terapia por Exercício/psicologia , Feminino , Humanos , Masculino , Pandemias , Qualidade de Vida
9.
Clin Exp Rheumatol ; 40(11): 2188-2193, 2022 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-35930493

RESUMO

OBJECTIVES: Approximately 1 child in 1,000 is affected by juvenile idiopathic arthritis (JIA). Persistent, undiagnosed JIA with high disease activity interferes with daily life and carries a risk of irreversible physical and psychosocial damage. Due to its relative rarity, primary care physicians often do not recognise it. Consequently, diagnosis and referral to paediatric rheumatologists are delayed. We aimed to evaluate the knowledge of Israeli paediatricians and paediatric orthopaedic surgeons regarding the epidemiology, clinical manifestations, laboratory parameters and treatment of JIA. METHODS: An 11-item, online questionnaire regarding JIA was sent to Israeli paediatricians and paediatric orthopaedic surgeons. The questionnaire was completed by 318 paediatricians and 30 paediatric orthopaedic surgeons (total response rate 22.5%). RESULTS: The average score was 67/100 points and the pass rate was 70.1% (set at 60 points). Several factors were associated with better overall scores: paediatric residents compared to senior physicians, exposure to rheumatology during residency, and seeing more patients with JIA in the past 5 years. No significant difference was found between paediatricians and paediatric orthopaedic surgeons. The true incidence of JIA was underestimated by 40% of participants, 30-45% were not familiar with its clinical presentation (age of onset, pain characteristics, chronic uveitis symptoms), and 60% were not familiar with up-to-date treatments. CONCLUSIONS: Paediatricians and paediatric orthopaedic surgeons in Israel have gaps in knowledge regarding JIA. This could result in delayed referral and treatment, which might affect outcomes. The results of this study highlight the need for better education and exposure to a rheumatologist, to improve knowledge and recognition of JIA.


Assuntos
Artrite Juvenil , Cirurgiões Ortopédicos , Reumatologia , Criança , Humanos , Artrite Juvenil/diagnóstico , Artrite Juvenil/epidemiologia , Artrite Juvenil/terapia , Israel/epidemiologia , Pediatras
10.
J Med Internet Res ; 24(2): e30457, 2022 02 02.
Artigo em Inglês | MEDLINE | ID: mdl-35107431

RESUMO

BACKGROUND: Juvenile idiopathic arthritis (JIA) management aims to promote remission through timely, individualized, well-coordinated interdisciplinary care using a range of pharmacological, physical, psychological, and educational interventions. However, achieving this goal is workforce-intensive. Harnessing the burgeoning eHealth and mobile health (mHealth) interventions could be a resource-efficient way of supplementing JIA management. OBJECTIVE: This systematic review aims to identify the eHealth and mHealth interventions that have been proven to be effective in supporting health outcomes for children and young people (aged 1-18 years) living with JIA. METHODS: We systematically searched 15 databases (2018-2021). Studies were eligible if they considered children and young people (aged 1-18 years) diagnosed with JIA, an eHealth or mHealth intervention, any comparator, and health outcomes related to the used interventions. Independently, 2 reviewers screened the studies for inclusion and appraised the study quality using the Downs and Black (modified) checklist. Study outcomes were summarized using a narrative, descriptive method and, where possible, combined for a meta-analysis using a random-effects model. RESULTS: Of the 301 studies identified in the search strategy, 15 (5%) fair-to-good-quality studies met the inclusion criteria, which identified 10 interventions for JIA (age 4-18.6 years). Of these 10 interventions, 5 (50%) supported symptom monitoring by capturing real-time data using health applications, electronic diaries, or web-based portals to monitor pain or health-related quality of life (HRQoL). Within individual studies, a preference was demonstrated for real-time pain monitoring over recall pain assessments because of a peak-end effect, improved time efficiency (P=.002), and meeting children's and young people's HRQoL needs (P<.001) during pediatric rheumatology consultations. Furthermore, 20% (2/10) of interventions supported physical activity promotion using a web-based program or a wearable activity tracker. The web-based program exhibited a moderate effect, which increased endurance time, physical activity levels, and moderate to vigorous physical activity (standardized mean difference [SMD] 0.60, SD 0.02-1.18; I2=79%; P=.04). The final 30% (3/10) of interventions supported self-management development through web-based programs, or apps, facilitating a small effect, reducing pain intensity (SMD -0.14, 95% CI -0.43 to 0.15; I2=53%; P=.33), and increasing disease knowledge and self-efficacy (SMD 0.30, 95% CI 0.03-0.56; I2=74%; P=.03). These results were not statistically significant. No effect was seen regarding pain interference, HRQoL, anxiety, depression, pain coping, disease activity, functional ability, or treatment adherence. CONCLUSIONS: Evidence that supports the inclusion of eHealth and mHealth interventions in JIA management is increasing. However, this evidence needs to be considered cautiously because of the small sample size, wide CIs, and moderate to high statistical heterogeneity. More rigorous research is needed on the longitudinal effects of real-time monitoring, web-based pediatric rheumatologist-children and young people interactions, the comparison among different self-management programs, and the use of wearable technologies as an objective measurement for monitoring physical activity before any recommendations that inform current practice can be given.


Assuntos
Artrite Juvenil , Autogestão , Telemedicina , Adolescente , Artrite Juvenil/terapia , Criança , Pré-Escolar , Exercício Físico , Humanos , Lactente , Qualidade de Vida/psicologia , Telemedicina/métodos
11.
J Med Internet Res ; 22(7): e16234, 2020 07 29.
Artigo em Inglês | MEDLINE | ID: mdl-32723728

RESUMO

BACKGROUND: Juvenile idiopathic arthritis (JIA) is a serious and potentially debilitating pediatric illness. Improved disease self-management may help to improve health outcomes. OBJECTIVE: This study aimed to evaluate the effectiveness of the Teens Taking Charge Web-based self-management intervention in reducing symptoms and improving health-related quality of life (HRQL) in adolescents with JIA compared with a Web-based education control condition. METHODS: Adolescents with JIA aged 12 to 18 years were recruited from 11 Canadian pediatric rheumatology centers. Caregivers were invited to participate along with their child. In addition to standard medical care, participants were randomized to receive either (1) the Teens Taking Charge self-management intervention or (2) a Web-based education control condition for a period of 12 weeks. Adolescents in the intervention group completed website modules addressing cognitive behavioral coping skills, stress management, and other self-management topics, while also receiving monthly telephone calls from a trained health coach. Adolescents in the education control group were instructed to view a series of preselected public JIA educational websites and received monthly calls from a coach who asked about their own best efforts at managing JIA. Caregivers in the intervention group completed website modules related to promoting independence and disease self-management in their child. Caregivers in the education control group were instructed to view a series of preselected public JIA educational websites. Outcome assessment occurred at baseline, 12 weeks (posttreatment), and at 6 and 12 months postrandomization. The primary outcomes were pain intensity, pain interference, and HRQL. Secondary outcomes were emotional symptoms, adherence, coping, knowledge, and self-efficacy. RESULTS: In total, 333 adolescents and 306 caregivers were enrolled. Significant overall reductions in pain intensity (P=.02) and pain interference (P=.007) were observed for intervention group participants compared with those in the education control group, after adjusting for baseline levels. There was a significant overall improvement in HRQL related to problems with pain (P=.02) and problems with daily activities (P=.01). There was also a significant difference in the intervention group over time (P=.008) for HRQL related to treatment problems, with the intervention group participants demonstrating improved HRQL by 12 months compared with education control group participants. Both groups showed nonsignificant improvements compared with baseline in other primary outcomes. There were no significant differences between the groups in any secondary outcomes or caregiver-reported outcomes. CONCLUSIONS: The results of this randomized trial suggest that the Teens Taking Charge Web-based intervention is effective at reducing both pain intensity and pain interference, as well as improving HRQL in adolescents with JIA, compared with education control. These effects are sustained for up to 12 months following program completion. The Teens Taking Charge program is now publicly available at no cost. TRIAL REGISTRATION: ClinicalTrials.gov NCT01572896; https://clinicaltrials.gov/ct2/show/NCT01572896.


Assuntos
Artrite Juvenil/terapia , Qualidade de Vida/psicologia , Autogestão/métodos , Telefone/normas , Adolescente , Artrite Juvenil/psicologia , Criança , Feminino , Humanos , Internet , Masculino
12.
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
13.
Clin Exp Rheumatol ; 36(6): 1086-1094, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-29652654

RESUMO

Most juvenile idiopathic arthritis (JIA) patients need to attend adult rheumatology centres to continue the clinical management of their disease and to receive adequate long-term treatment. Transition from the paediatric to the adult health care team is a critical moment in the clinical history of these patients, but unfortunately, about 50% of the transfer processes to adult rheumatology are not successful, putting these patients at high risk of unfavourable outcomes. There are several obstacles to the success of transitional care for JIA patients, such as the absence of specific criteria for the assessment of disease activity, the lack of specific treatment recommendations for JIA adult patients, the poor adolescent-specific training for adult rheumatologists, and the shortage of resources. The improvement in the transition process in medical care has become a priority in many health care systems, but not many studies evaluating transition models, and common methodologies for measuring transition outcomes are available. The aim of this review is to identify and describe the models of transitional care in JIA, providing insights and recommendations to develop effective transitional care models in this disease.


Assuntos
Artrite Juvenil/terapia , Reumatologia/métodos , Transição para Assistência do Adulto , Adolescente , Adulto , Fatores Etários , Artrite Juvenil/diagnóstico , Artrite Juvenil/epidemiologia , Humanos , Padrões de Prática Médica , Reumatologistas , Reumatologia/organização & administração , Fatores de Tempo , Transição para Assistência do Adulto/organização & administração , Resultado do Tratamento , Adulto Jovem
14.
Arch Phys Med Rehabil ; 99(1): 178-193.e1, 2018 01.
Artigo em Inglês | MEDLINE | ID: mdl-28729171

RESUMO

OBJECTIVE: To conduct a systematic review to evaluate the efficacy of exercise interventions in improving outcomes across domains of functioning and disability in children and adolescents with juvenile idiopathic arthritis (JIA). DATA SOURCES: Seven electronic databases were systematically searched up to November 16, 2016. STUDY SELECTION: Original data, analytic prospective design, physical therapy-led exercise intervention evaluation, children and adolescents with JIA, and assessment of functional, structural, activity, participation, or quality of life outcomes. DATA EXTRACTION: Two authors screened search results, and discrepancies were resolved by consensus. Of 5037 potentially relevant studies, 9 randomized controlled trials and 1 cohort study were included and scored. DATA SYNTHESIS: Study quality (Downs and Black quality assessment tool) and level of evidence (Oxford Centre of Evidence-Based Medicine model) were assessed and meta-analysis conducted where appropriate. Alternatively, a descriptive summary approach was chosen. All randomized controlled trials were moderate-quality intervention studies (level 2b evidence; median Downs and Black score, 20 out of 32; range, 15-27). Interventions included aquatic, strengthening, proprioceptive, aerobic, and Pilates exercises. Pediatric activity capacity (Child Health Assessment Questionnaire) improved with exercise (mean difference, .45; 95% confidence interval, .05-.76). Furthermore, descriptive summaries indicated improved activity capacity, body function and structure (pain and muscle strength), and quality of life outcomes. CONCLUSIONS: Exercise therapy appears to be well tolerated and beneficial across clinically relevant outcomes in patients with JIA. The paucity of high-quality evidence and study heterogeneity limited the ability to provide conclusive, generalizing evidence for the efficacy of exercise therapy and to provide specific recommendations for clinical practice at this time. Future research evaluating exercise program implementation using validated outcomes and detailed adherence and safety assessment is needed to optimize clinical decision pathways in patients with JIA.


Assuntos
Artrite Juvenil/terapia , Terapia por Exercício , Terapia por Exercício/efeitos adversos , Terapia por Exercício/métodos , Humanos , Cooperação do Paciente , Resultado do Tratamento
15.
Klin Monbl Augenheilkd ; 235(4): 373-376, 2018 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-29452454

RESUMO

BACKGROUND: Pediatric uveitis is associated with a high incidence of severe and frequently permanent visual loss. This article summarizes the current understanding of the disease and the therapeutic options that are available to improve treatment outcomes. METHODS: A Medline search spanning the last 10 years was undertaken using the key terms "pediatric uveitis" or "childhood uveitis" and "macular edema". Articles which appertained to case reports or small case series were excluded from consideration, whereas those in which the opinions of experts were expressed, as well as reviews, were not. The information contained in these latter two forms of publication was particularly valuable, owing to the scarcity of prospective clinical data appertaining to the treatment of pediatric uveitis-associated macular edema. RESULTS: Ten years ago, 34% of children who presented with uveitis manifested secondary complications at the time of diagnosis. During the ensuing 3 years of treatment, this rose to 86%. Heightening awareness of the disease with earlier referrals to expert centers, as well as the advent of therapeutic strategies involving anti-TNF agents and intravitreal corticosteroids, have led to a decrease in the incidence of legal blindness in the affected eyes from 18 - 69% to below 8% during a five-year course of treatment. CONCLUSION: Early diagnosis and strict control of inflammatory activity have led to a dramatic reduction in the incidence of vision-threatening secondary complications. In the majority of cases, it has also been possible to resolve cystoid macular edema, which, if insufficiently controlled by systemic therapy, usually responds well to intravitreal dexamethasone implants.


Assuntos
Edema Macular/diagnóstico , Uveíte/diagnóstico , Corticosteroides/administração & dosagem , Artrite Juvenil/complicações , Artrite Juvenil/diagnóstico , Artrite Juvenil/terapia , Criança , Diagnóstico Precoce , Intervenção Médica Precoce , Humanos , Comunicação Interdisciplinar , Colaboração Intersetorial , Injeções Intravítreas , Edema Macular/complicações , Edema Macular/terapia , Metotrexato/uso terapêutico , Resultado do Tratamento , Triancinolona/uso terapêutico , Fator de Necrose Tumoral alfa/antagonistas & inibidores , Uveíte/complicações , Uveíte/terapia , Transtornos da Visão/diagnóstico , Transtornos da Visão/etiologia , Transtornos da Visão/terapia
16.
Curr Opin Rheumatol ; 27(5): 505-10, 2015 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-26147756

RESUMO

PURPOSE OF REVIEW: To review recent advances in the management strategies of polyarticular course juvenile idiopathic arthritis (JIA) and identify unanswered questions and avenues for further research. RECENT FINDINGS: There is evidence for an early, aggressive, treat-to-target approach for polyarticular JIA. Clinical disease activity criteria have been recently defined and validated, including criteria for inactive disease and the juvenile arthritis disease activity score (JADAS). There is a need for evidence-based, defined disease targets and biomarkers for prediction of response, including targets for remission induction, and guidelines on drug withdrawal. Recent treatment consensus plans and guidelines are discussed and compared, including the 2015 NHS England clinical policy statement, the 2014 Childhood Arthritis and Rheumatology Research Alliance (CARRA) treatment plans and the 2011 American College of Rheumatology (ACR) guidelines. Evidence for new agents such as tocilizumab, rituximab, golimumab, ustekinumab, certolizumab and tofacitinib is promising: the recent clinical trials are summarized here. Stratification of individual patient treatment remains a goal, and predictive biomarkers have been shown to predict success in the withdrawal of methotrexate therapy. SUMMARY: There are promising advances in the treatment approaches, disease activity criteria, clinical guidelines, pharmaceutical choices and individually stratified therapy choices for polyarticular JIA.


Assuntos
Artrite Juvenil/tratamento farmacológico , Anticorpos Monoclonais/uso terapêutico , Artrite/tratamento farmacológico , Artrite/terapia , Artrite Juvenil/terapia , Criança , Inibidores Enzimáticos/uso terapêutico , Guias como Assunto , Humanos , Resultado do Tratamento
17.
Child Care Health Dev ; 39(1): 69-80, 2013 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-22329453

RESUMO

BACKGROUND: Several studies have investigated preferences and experiences of adolescents with different chronic conditions and their parents. Some have included the provider's perspective. Studies comparing the three perspectives on satisfaction with (transitional) care for different chronic conditions, however, are lacking. The main aim of this paper was to explore differences and similarities in perspectives between adolescents with chronic conditions, their parents and providers on transitional care. A secondary aim was to explore the extent to which such perspectives are disease-specific. METHODS: This quantitative study included 127 adolescents with juvenile rheumatoid arthritis (JRA), neuromuscular disorder with chronic ventilation (NMD), or diabetes Type I; 166 parents; and 19 care providers. To assess the experiences and perceptions of adolescents and parents on transitional care, we used the 'Mind the Gap' instrument. The survey for providers included a checklist of shortcomings in transitional care. RESULTS: Adolescents rate current care significantly worse than parents on opportunities to make their own decisions and be seen without parents present. Adolescents also rated providers' current social skills lower than parents. Adolescents are more satisfied than their parents about transitional care process aspects such as co-ordination and communication between providers, but both groups indicated that the care process offers most room for improvement. Providers reported other aspects such as adolescents' lack of responsibility with regard to self-care and parents' difficulties with ceding control to their children. When looking at the three disease groups - JRA, NMD, diabetes, we found only small differences. According to providers, shortcomings in the care process with respect to guidelines, protocols and co-ordination are most prevalent. CONCLUSION: Adolescents, parents and providers all report that there is room for improvement with regard to aspects of the care delivery process in transitional care. With respect to disease-specific issues we only found small differences.


Assuntos
Serviços de Saúde do Adolescente/normas , Atitude Frente a Saúde , Doença Crônica/terapia , Qualidade da Assistência à Saúde , Transição para Assistência do Adulto/normas , Adolescente , Serviços de Saúde do Adolescente/organização & administração , Adulto , Artrite Juvenil/psicologia , Artrite Juvenil/terapia , Atitude do Pessoal de Saúde , Criança , Doença Crônica/psicologia , Diabetes Mellitus Tipo 1/psicologia , Diabetes Mellitus Tipo 1/terapia , Feminino , Pesquisa sobre Serviços de Saúde/métodos , Humanos , Masculino , Países Baixos , Doenças Neuromusculares/psicologia , Doenças Neuromusculares/terapia , Pais/psicologia , Satisfação do Paciente , Transição para Assistência do Adulto/organização & administração , Adulto Jovem
18.
J Clin Rheumatol ; 19(1): 35-7, 2013 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-23319022

RESUMO

Rice bodies are synovial fluid nodules macroscopically resembling shiny white rice beans. They have been seen in synovial fluid from several types of inflammatory arthritis including tuberculosis, pyogenic arthritis, and juvenile idiopathic arthritis and adult rheumatoid arthritis. Microscopically, they consist of amorphous material, fibrin, and collagen. We report the rare cases of 2 children younger than 3 years with multiple rice body formations in the knee joints.


Assuntos
Artrite Juvenil/diagnóstico por imagem , Artrite Juvenil/patologia , Articulação do Joelho/diagnóstico por imagem , Articulação do Joelho/patologia , Líquido Sinovial/diagnóstico por imagem , Membrana Sinovial/diagnóstico por imagem , Corticosteroides/uso terapêutico , Anti-Inflamatórios não Esteroides/uso terapêutico , Artrite Juvenil/terapia , Artrografia , Pré-Escolar , Colágeno/metabolismo , Feminino , Fibrina/metabolismo , Humanos , Imageamento por Ressonância Magnética , Sinovectomia , Membrana Sinovial/metabolismo , Resultado do Tratamento
19.
J Child Health Care ; 27(3): 435-449, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-35235476

RESUMO

Transition services for young people with long-term conditions often fall short. This qualitative study explored perspectives on service features that enable effective transition in epilepsy and juvenile idiopathic arthritis. Patients, parents, clinicians and service commissioners took part in semi-structured interviews (n = 18). Thematic analysis was used to identify key features, barriers and facilitators of effective transition across participant groups. Analysis led to the development of nine sub-themes which mapped to overarching domains of communication, capability, continuity and capacity. Findings include the need for age appropriate communication, the link between parental dependence, self-care and patient knowledge, the value of service integration for continuity and the impact of capacity on flexible and age appropriate transition services.


Assuntos
Artrite Juvenil , Epilepsia , Transição para Assistência do Adulto , Cuidado Transicional , Humanos , Adolescente , Artrite Juvenil/terapia , Pesquisa Qualitativa , Epilepsia/terapia
20.
Eur J Pediatr ; 170(2): 157-67, 2011 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-20556424

RESUMO

Advances in understanding the pathogenesis of rheumatic diseases have led to the discovery of mechanisms of inflammation and autoimmunity and have made possible the invention of new target-specific drugs. Biologic drugs, designed to inhibit specific components of the immune system, such as cytokines, cytokine gene expression, and their complex interactions, have revolutionized the treatment options in pediatric rheumatology. Only three agents are currently available for treating juvenile idiopathic arthritis (JIA): etanercept, at the dose of 0.8 mg/kg once weekly, adalimumab at the dose of 24 mg/m(2) every 2 weeks, and abatacept at the dose of 10 mg/kg at weeks 0, 2, 4, and then every 4 weeks. They are well tolerated and relatively safe in children: Side effects are generally mild and include injection site reactions and infections. Infliximab, rilonacept, and canakinumab are also approved by the Food and Drug Administration for treatment of pediatric autoimmune disorders and are currently investigated in JIA. This review summarizes the current state of biologic drugs, their clinical application, and their efficacy and safety in the pediatric age.


Assuntos
Anticorpos Monoclonais/administração & dosagem , Antirreumáticos/administração & dosagem , Doenças Autoimunes/terapia , Produtos Biológicos/administração & dosagem , Anticorpos Monoclonais/efeitos adversos , Antirreumáticos/efeitos adversos , Artrite Juvenil/terapia , Doenças Autoimunes/imunologia , Produtos Biológicos/efeitos adversos , Criança , Humanos , Resultado do Tratamento
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