Confidence amongst multidisciplinary professionals in managing paediatric rheumatic disease in Australia

Objective. Interprofessional collaboration is a crucial component of care for children with rheumatic disease. Interprofessional care, when delivered appropriately, prevents disability and improves long-term prognosis in this vulnerable group. Methods. The aim of this survey was to explore allied health professionals’ and nurses’ confidence in treating paediatric rheumatology patients. Results. Overall, 117 participants were recruited, 77.9% of participants reported being “not confident at all,” “not confident,” or “neutral” in treating children with rheumatic diseases (RD) despite 65.1% of participants reporting having treated >1 paediatric rheumatology case in the past month. Furthermore, 67.2% of participants felt their undergraduate education in paediatric rheumatology was inadequate. “Journals” or “texts books” were used by 49.3% of participants as their primary source of continuing professional development (CPD) and 39.3% of participants indicated that they did not undertake any CPD related to paediatric rheumatology. Small group and online education were perceived to be potentially of “great benefit” for CPD. Conclusion. This paper highlights allied health professionals’ and nurses’ perceived inadequacy of their undergraduate education in paediatric RD and their low confidence in recognising and treating RD. Undergraduate and postgraduate education opportunities focusing on interprofessional collaboration should be developed to address this workforce deficiency

Diagnosis, monitoring and treatment of systemic lupus erythematosus: a systematic review of clinical practice guidelines.

Objectives: Management of SLE is complex and variability in practices exists. Guidelines have been developed to help improve the management of SLE patients but there has been no formal evaluation of these guidelines. This study aims to compare the scope, quality and consistency of clinical practice guidelines on the diagnosis, monitoring and treatment of patients with systemic lupus erythematosus (SLE). Methods: Electronic databases were searched up to April 2014. The Appraisal of Guidelines for Research and Evaluation (AGREE) II instrument and textual synthesis was used to appraise and compare recommendations. Results: Nine clinical practice guidelines and five consensus statements were identified, which covered seven topics: diagnosis, monitoring, treatment, neuropsychiatric SLE, lupus nephritis, anti-phospholipid syndrome and other manifestations of lupus. The methodological quality of the guidelines was variable, with the overall mean AGREE II scores ranging from 31% to 75% out of a maximum 100%. Scores were consistently low for applicability, with only one guideline scoring above 50%. There was substantial variability in the treatments recommended for class II and V lupus nephritis, the recommended duration of maintenance therapy for class III/IV lupus nephritis (from 1 to 4 years), and timing of ophthalmological examination for patients on corticosteroids. Conclusion: Published guidelines on SLE cover a complex area of clinical care but the methodological quality, scope and recommendations varied substantially. Collaborative and multidisciplinary efforts to develop comprehensive, high-quality evidence-based guidelines are needed to promote best treatment and health outcomes for patients with SLE.DT is funded by a postgraduate scholarship from the Sydney Medical School, The University of Sydney

Physical Examination Tools Used to Identify Swollen and Tender Lower Limb Joints in Juvenile Idiopathic Arthritis: A Scoping Review

Article ID 3408162Background. Juvenile idiopathic arthritis (JIA) is the most common form of rheumatic disease in childhood and adolescents, affecting between 16 and 150 per 100,000 young persons below the age of 16. The lower limb is commonly affected in JIA, with joint swelling and tenderness often observed as a result of active synovitis. Objective. The objective of this scoping review is to identify the existence of physical examination (PE) tools to identify and record swollen and tender lower limb joints in children with JIA. Methods. Two reviewers individually screened the eligibility of titles and abstracts retrieved from the following online databases: MEDLINE, EMBASE, Cochrane Central Register of Controlled Trials, and CINAHL. Studies that proposed and validated a comprehensive lower limb PE tool were included in this scoping review. Results. After removal of duplicates, 1232 citations were retrieved, in which twelve were identified as potentially eligible. No studies met the set criteria for inclusion. Conclusion. Further research is needed in developing and validating specific PE tools for clinicians such as podiatrists and other allied health professionals involved in the management of pathological lower limb joints in children diagnosed with JIA. These lower limb PE tools may be useful in conjunction with existing disease activity scores to optimise screening of the lower extremity and monitoring the efficacy of targeted interventions.sch_pod2018pub5372pu

Effectiveness of preformed foot orthoses in reducing lower limb pain, swollen and tender joints and in improving quality of life and gait parameters in children with juvenile idiopathic arthritis: a randomised controlled trial (Protocol)

Trial registration number This clinical trial has been registered with the Australian New Zealand Clinical Trials Registry: ACTRN12616001082493p. Ethics for this randomised controlled trial has been approved (16/09/21/4.03).Background Many children and adolescents with juvenile idiopathic arthritis experience lower limb problems which may lead to physical disabilities significantly impacting on their quality of life and symptoms. Emerging evidence has identified the effective role of podiatry in the management of juvenile idiopathic arthritis, suggesting the clinical benefit of different orthotic therapies. Methods This study will be a parallel-group designed, multicentre, randomised controlled trial, aiming to recruit 66 children and adolescents with juvenile idiopathic arthritis aged between 5 and 18 years. Those recruited will need to be diagnosed according to the International League of Associations for Rheumatology criteria, and present with lower limb joint pain, swelling and/or tenderness. Participants will be recruited from three outpatient hospital clinics in New South Wales, Australia. Participants will be randomly allocated to receive a trial or control intervention. The trial group will be prescribed a customised preformed foot orthoses; instead, the control group will receive a flat 1 mm insole with no corrective modifications. Primary outcome measure recorded will be pain. Secondary outcomes will be quality of life, foot disability, swollen and tender joint count and gait parameters (such as plantar pressures, walking speed, stance and swing time). The allocated foot orthoses will be worn for 12 months, with data collected at baseline, 4 weeks, 3, 6 and 12 months intervals. Group allocation will be concealed and all analyses will be carried out on an intention to treat. Discussion The purpose of this trial is to explore the efficacy of a cost-effective, non-invasive podiatric intervention that will be prescribed at the initial biomechanical consultation. This approach will promote early clinical intervention, which is the gold standard in paediatric rheumatology. Furthermore, this study has the potential to provide new evidence for the effectiveness of a mechanical intervention alone to reduce swollen and tender joints in juvenile idiopathic arthritis.sch_pod1pub5056pub

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

Derek Santos - ORCID: 0000-0001-9936-715X https://orcid.org/0000-0001-9936-715XPurpose 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.Open Access funding enabled and organized by CAUL and its Member Institutionshttps://doi.org/10.1007/s11926-024-01145-waheadofprintaheadofprin

Using digital health technologies to monitor pain, medication adherence and physical activity in young people with Juvenile Idiopathic

Derek Santos - ORCID: 0000-0001-9936-715X https://orcid.org/0000-0001-9936-715XJuvenile Idiopathic Arthritis can be influenced by pain, medication adherence and physi- 20 cal activity. A new digital health intervention InteractiveClinics, aims to monitor these modifiable 21 risk factors. Twelve children, aged 10 to 18 years, received daily notifications on a smart watch to 22 record their pain level and take their medications, using a customized mobile app, synchronized to 23 a secure web-based platform. Daily physical activity levels were automatically recorded by wearing 24 a smart watch. Using a quantitative descriptive research design, feasibility and user adoption was 25 evaluated. Web-based data revealed: pain mean app usage, 68% (SD 30, range 28.6% to 100%), pain 26 score 2.9 out of ten (SD 1.8, range 0.3 to 6.2 out of 10). Medication adherence; mean app usage 20.7% 27 (SD, range 0% to 71.4%), recording 39% (71/182) of the expected daily, and 37.5% (3/8) of the weekly 28 medications. Pro-re-nata (PRN) medication monitoring: 33.3% (4/12), 1 to 6 additional medications 29 (mean 3.5, SD 2.4) for 2-6 days. Physical activity: watch wearing behaviour 69% (435/630), recording 30 low levels of moderate to vigorous physical activity (mean 11.8, SD 13.5 minutes, range 0 – 47 31 minutes). Concluding, remote monitoring of real-time data is feasible. However, further research is 32 needed to increase adoption rates by children.inpressinpres

Using Digital Health Technologies to Monitor Pain, Medication Adherence and Physical Activity in Young People with Juvenile Idiopathic Arthritis: A Feasibility Study

Derek Santos - ORCID: 0000-0001-9936-715X https://orcid.org/0000-0001-9936-715XJuvenile idiopathic arthritis can be influenced by pain, medication adherence, and physical activity. A new digital health intervention, InteractiveClinics, aims to monitor these modifiable risk factors. Twelve children, aged 10 to 18 years, received daily notifications on a smartwatch to record their pain levels and take their medications, using a customised mobile app synchronised to a secure web-based platform. Daily physical activity levels were automatically recorded by wearing a smartwatch. Using a quantitative descriptive research design, feasibility and user adoption were evaluated. The web-based data revealed the following: Pain: mean app usage: 68% (SD 30, range: 28.6% to 100%); pain score: 2.9 out of 10 (SD 1.8, range: 0.3 to 6.2 out of 10). Medication adherence: mean app usage: 20.7% (SD, range: 0% to 71.4%), recording 39% (71/182) of the expected daily and 37.5% (3/8) of the weekly medications. Pro-re-nata (PRN) medication monitoring: 33.3% (4/12), one to six additional medications (mean 3.5, SD 2.4) for 2–6 days. Physical activity: watch wearing behaviour: 69.7% (439/630), recording low levels of moderate-to-vigorous physical activity (mean: 11.8, SD: 13.5 min, range: 0–47 min). To conclude, remote monitoring of real-time data is feasible. However, further research is needed to increase adoption rates among children.https://doi.org/10.3390/healthcare1203039212pubpub

Effectiveness of eHealth and mHealth interventions supporting children and young people living with juvenile idiopathic arthritis: Systematic review and meta-analysis

From PubMed via Jisc Publications RouterJuvenile 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. 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. 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. 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; I =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; I =53%; P=.33), and increasing disease knowledge and self-efficacy (SMD 0.30, 95% CI 0.03-0.56; I =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. 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.24pubpub

Physical examination tool for swollen and tender lower limb joints in juvenile idiopathic arthritis: A pilot diagnostic accuracy study

From MDPI via Jisc Publications RouterDerek Santos - ORCID: 0000-0001-9936-715X https://orcid.org/0000-0001-9936-715XBackground: Juvenile idiopathic arthritis (JIA) is the most common rheumatic disease in children, with lower limb involvement highly prevalent. Recent evidence has highlighted the lack of specific lower limb physical examination (PE) tools for clinicians assisting the paediatric rheumatology team in identifying lower extremity disease in patients with JIA. Early clinical detection may lead to more prompt and targeted interventions to reduce lower limb problems in children with JIA. The aim of this pilot study is to provide preliminary data on the diagnostic accuracy of a lower limb PE tool in JIA. Methods: Children with JIA requiring magnetic resonance imaging (MRI) on their lower limb joints per their usual care were eligible. Lower limb joint counts were conducted clinically by a podiatrist and paediatric rheumatologist using the proposed twenty joint per side, PE tool. The PE were compared to MRI assessments completed by two independent paediatric radiologists. Data were analysed using agreement (observed, positive and negative) and Cohen’s kappa with 95% CIs. Results: Fifteen participants were recruited into the study in which 600 lower limb joints were clinically examined. Statistical analysis showed excellent inter-rater reliability between podiatrist and paediatric rheumatologist for both joint swelling and tenderness. Results of the intra-rater reliability of the podiatrist using the PE tool indicated excellent percentage agreements (98.5−100%) and substantial kappa coefficients (0.93−1). The inter-rater reliability between radiological assessments contrasted the PE results, showing low agreement and poor reliability. Comparisons between PE and MRI resulted in poor kappa coefficients and low agreement percentages. The most agreeable joint between MRI and PE was the ankle joint, while the worst performing joint was the sub-talar joint. Conclusion: Results indicate potential clinical reliability; however, the validity and diagnostic accuracy of the proposed PE tool remains unclear due to low kappa coefficients and inconsistent agreements between PE and MRI results. Further research will be required before the tool may be used in a clinical setting.19pubpub

“Lupus means sacrifices” – the perspectives of adolescents and young adults with systemic lupus erythematosus.

Background: Disease activity, organ damage and treatment burden are often substantial in children and adolescents with systemic lupus erythematous (SLE), and the complex interplay among the developing child, their parents, and their peers makes effective management difficult. We aimed to describe the experiences and perspectives of adolescents and young adults diagnosed with juvenile-onset SLE to inform strategies for improving treatment and health outcomes. Methods: Focus groups and face-to-face semi-structured interviews were conducted with 26 patients aged 14 to 26 years, from five Australian hospitals in 2013-2014. Focus groups and interview transcripts were thematically analyzed. Results: Five themes were identified: marring identity (misrepresented self, heightened self-consciousness, sense of isolation); restricting major life decisions (narrowed career options, threat to parenthood); multifaceted confusion and uncertainty (frustration of delayed or misdiagnosis, needing age and culturally appropriate information, ambiguity about cause of symptoms, prognostic uncertainty, confronting transition to adult care); resentment of long-term treatment (restricting ambition, animosity towards medication use); gaining resilience (desire for independence, developing self-reliance, recalibrating perceived disease severity, depending on family, trusting physicians). Conclusions: Young patients with SLE perceive they have substantially limited physical and social capacities and restricted personal and career goals. Psychosocial and educational interventions targeted at improving confidence, self-efficacy, disease-related knowledge, social support, and resolving insecurities regarding patients’ capacity for self-management may alleviate psychosocial distress, improve adherence, and thus optimize health outcomes of adolescents and young adults with SLE.DJT is funded by a postgraduate scholarship from the Sydney Medical School, The University of Sydney. All authors have no relevant financial affiliations that would cause a conflict of interes