Is there an evidence for the role of multidisciplinary team in the management of active juvenile idiopathic arthritis?

Fingerhutová, Šárka; Saifridova, Melanie; Vránová, Markéta; Doležalová, Pavla; Sebkova, S.; Böhm, M.; Němcová, D.; Obrsalova, Jitka

doi:10.1186/1546-0096-12-s1-p177

Cited by 4 publications

(6 citation statements)

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“…The forefront of this support is provided through specialised Paediatric Rheumatology (PR) Centres, typically based in tertiary children's hospitals in major capital cities. These centres allow children and parents access to a one stop shop that delivers a range of holistic support and treatments that target both rheumatological and paediatric specific needs [39,45,46]. This is important because there are major differences between adult and paediatric care [39].…”

Section: Specialised Paediatric Rheumatology Centresmentioning

confidence: 99%

Paediatric Rheumatology Fails to Meet Current Benchmarks, a Call for Health Equity for Children Living with Juvenile Idiopathic Arthritis, Using Digital Health Technologies

Butler,

Sculley,

Santos

et al. 2024

Curr Rheumatol Rep

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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. Summary 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.

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Section: Specialised Paediatric Rheumatology Centresmentioning

confidence: 99%

Paediatric Rheumatology Fails to Meet Current Benchmarks, a Call for Health Equity for Children Living with Juvenile Idiopathic Arthritis, Using Digital Health Technologies

Butler,

Sculley,

Santos

et al. 2024

Curr Rheumatol Rep

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show abstract

“…The treatments aim to control the disease, promote clinical remission, and prevent long-term disability [ 2 - 5 ]. However, to achieve these goals, the management of JIA should be multifactorial [ 6 ]. Pediatric-specific issues need tending, such as the use of antirheumatic medications in children and young people, growth retardation, pain and coping, school attendance, psychosocial functioning, dealing with parents, and, in the adolescent years, preparing for the transition to adult care [ 4 , 7 , 8 ].…”

Section: Introductionmentioning

confidence: 99%

“…Pediatric-specific issues need tending, such as the use of antirheumatic medications in children and young people, growth retardation, pain and coping, school attendance, psychosocial functioning, dealing with parents, and, in the adolescent years, preparing for the transition to adult care [ 4 , 7 , 8 ]. For good reason, children and young people need to be closely monitored and supported by specialized rheumatology centers that provide interdisciplinary care using a range of pharmacological, physical, psychological, and educational interventions [ 6 , 9 - 12 ]. However, several barriers have been identified that hinder this current model of support, delaying the delivery of timely, individualized, and well-coordinated care.…”

Section: Introductionmentioning

confidence: 99%

Effectiveness of eHealth and mHealth Interventions Supporting Children and Young People Living With Juvenile Idiopathic Arthritis: Systematic Review and Meta-analysis

Butler¹,

Sculley²,

Santos³

et al. 2022

J Med Internet Res

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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.

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“…The treatments aim to control the disease, promote clinical remission, and prevent long-term disability [2][3][4][5]. However, to achieve these goals, the management of JIA should be multifactorial [6]. Pediatric-specific issues need tending, such as the use of antirheumatic medications in children and young people, growth retardation, pain and coping, school attendance, psychosocial functioning, dealing with parents, and, in the adolescent years, preparing for the transition to adult care [4,7,8].…”

Section: Introductionmentioning

confidence: 99%

“…Pediatric-specific issues need tending, such as the use of antirheumatic medications in children and young people, growth retardation, pain and coping, school attendance, psychosocial functioning, dealing with parents, and, in the adolescent years, preparing for the transition to adult care [4,7,8]. For good reason, children and young people need to be closely monitored and supported by specialized rheumatology centers that provide interdisciplinary care using a range of pharmacological, physical, psychological, and educational interventions [6,[9][10][11][12]. However, several barriers have been identified that hinder this current model of support, delaying the delivery of timely, individualized, and well-coordinated care.…”

Section: Introductionmentioning

confidence: 99%

Effectiveness of eHealth and mHealth Interventions Supporting Children and Young People Living With Juvenile Idiopathic Arthritis: Systematic Review and Meta-analysis (Preprint)

Butler¹,

Sculley²,

Santos³

et al. 2021

Preprint

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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.

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Is there an evidence for the role of multidisciplinary team in the management of active juvenile idiopathic arthritis?

Cited by 4 publications

References 0 publications

Paediatric Rheumatology Fails to Meet Current Benchmarks, a Call for Health Equity for Children Living with Juvenile Idiopathic Arthritis, Using Digital Health Technologies

Paediatric Rheumatology Fails to Meet Current Benchmarks, a Call for Health Equity for Children Living with Juvenile Idiopathic Arthritis, Using Digital Health Technologies

Effectiveness of eHealth and mHealth Interventions Supporting Children and Young People Living With Juvenile Idiopathic Arthritis: Systematic Review and Meta-analysis

Effectiveness of eHealth and mHealth Interventions Supporting Children and Young People Living With Juvenile Idiopathic Arthritis: Systematic Review and Meta-analysis (Preprint)

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