Browsing by Person "Singh-Grewal, Davinder"

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Development and Delivery of an Integrated Digital Healthcare Approach for children with Juvenile Idiopathic Arthritis: Usability Study
(JMIR Publications, 2024-09-17) Butler, Sonia; Sculley, Dean; Santos, Derek; Girones, Xavier; Singh-Grewal, Davinder; Coda, Andrea
Background: Juvenile Idiopathic Arthritis (JIA) is a chronic inflammatory disorder, with no cure. Most children are prescribed: several medications aimed to control disease activity, manage symptom, and reduce pain. Physical activity is also encouraged to retain musculoskeletal function. The primary determinants of treatment success are maintaining long term adherence, ongoing monitoring from a paediatric rheumatologist, and involvement from an interdisciplinary team. To support these goals, a new digital intervention was developed, InteractiveClinics, aimed to prompt children to take their medications, report pain levels, and increase their physical activity. Objective: This study aims to evaluate the usability of InteractiveClinics, by children with JIA. Methods: As part of this pediatric cross-sectional usability study, twelve children were asked to wear a smart watch for two weeks, synchronized to the InteractiveClinics phone app and web-based platform. Personalized notifications were sent daily to the watch and phone, to prompt and record medication adherence and pain levels. Physical activity was automatically recorded by the watch. At the end of the study, all children and parents completed a post-intervention survey. Written comments were also encouraged to gain further feedback. Descriptive statistics were used to summarize the survey results, and all qualitative data employed thematic analysis. Results: Twelve children, aged 10 to 18 years (mean 14.2, SD 3.1, female 66.7%, 8/12) and one parent for each child (n=12, 66.7%, 8/12, female) were enrolled in the study. Reviewing the highest and lowest agreement areas of the survey, most children and parents liked the smart watch and web-based platform, they found it easy to learn and simple to use. They were also satisfied with the pain and physical activity module. However, usability and acceptability barriers were identified in the phone app and medication module that hindered uptake. Children required a more unique in-app experience, and their suggestive improvements included: more personalisation within the app, simplification by removing all non-relevant links, flexibility in response times, improved conferment through gamification, additional comment fields for the input of more data such as medication side effects or pain-related symptoms, more detailed graphical illustrations of the physical activity module, including a breakdown of metrics, and importantly, interconnections between modules, because medication adherence, pain levels and physical activity can each influence the other. Overall improving usefulness for children and parents. Conclusions: Usability of InteractiveClinics was positive. Children and parents liked the watch and web-based platform and were satisfied with the pain and physical activity module. However, children wanted a more unique in-app experience, through more personalisation, simplification, flexibility, conferment, comment fields, graphical illustrations, a breakdown of metrics, and interconnections. Certainly, inclusions needed to promote user adoption and advancement of new validated digital health interventions in pediatric rheumatology, to support the delivery of integrated care. Clinical Trial: Australian and New Zealand Clinical Trial Registry: ACTRN12616000665437.
Effect of customised preformed foot orthoses on gait parameters in children with juvenile idiopathic arthritis: A multicentre randomised clinical trial
(Elsevier, 2022-04-22) Fellas, Antoni; Singh-Grewal, Davinder; Chaitow, Jeffrey; Santos, Derek; Clapham, Matthew; Coda, Andrea
Background Children with juvenile idiopathic arthritis (JIA) can experience significant physical impairment of the lower extremity. Prolonged joint disease and symptoms may cause gait alterations such as reduced walking speed and increased plantar pressures in diseased areas of their feet. There is limited robust clinical trials investigating the effect of non-invasive mechanical therapies such as foot orthoses (FOs) on improving gait parameters in children with JIA.
Effect of preformed foot orthoses in reducing pain in children with juvenile idiopathic arthritis: A multicentre randomised clinical trial
(Oxford University Press, 2021-10-14) Fellas, Antoni; Singh-Grewal, Davinder; Chaitow, Jeffrey; Santos, Derek; Clapham, Matthew; Coda, Andrea
Objectives The aim of this study is to investigate the effect of customised preformed foot orthoses on pain, quality of life, swollen and tender lower joints and foot and ankle disability in children with juvenile idiopathic arthritis (JIA). Methods Parallel group design. Children diagnosed with JIA were recruited from the three children’s hospital in NSW, Australia. Participants were randomly assigned to a control group receiving a standard flat innersole (sham) with no corrective modifications. The trial group were prescribed a preformed device that was customised based on biomechanical assessments. Pain was the primary outcome and was followed up to 12-months post intervention. Secondary outcomes include quality of life, foot and ankle disability and swollen and tender joints. A linear mixed model was used to assess the impact of the intervention at each time point. Results 66 participants were recruited. Child reported pain was reduced statistically and clinically significant at 4-weeks and 3 months post intervention in favour of the trial group. Statistically significance was not reached at 6 and 12-month follow-ups. Quality of life and foot and ankle disability were not statistically significant at any follow-up; however, tender midfoot and ankle joints were significantly reduced 6-months post intervention. Conclusion Results of this clinical trial indicate customised preformed foot orthoses can be effective in reducing pain and tender joints in children with JIA exhibiting foot and ankle symptoms. Long-term efficacy of foot orthoses remains unclear. Overall, the trial intervention was safe, inexpensive and well tolerated by paediatric patients. Trial registry Australian New Zealand Clinical Trials Registry (ANZCTR): 12616001082493
Effectiveness of eHealth and mHealth interventions supporting children and young people living with juvenile idiopathic arthritis: Systematic review and meta-analysis
(2022-02-02) Butler, Sonia; Sculley, Dean; Santos, Derek; Fellas, Antoni; Gironès, Xavier; Singh-Grewal, Davinder; Coda, Andrea
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. 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.
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)
(BMJ Publishing Group Ltd, 2017-11-30) Fellas, Antoni; Singh-Grewal, Davinder; Chaitow, Jeffrey; Santos, Derek; Coda, Andrea
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.
Harnessing interactive technologies to improve health outcomes in juvenile idiopathic arthritis
(Bio Med Central, 2017-05-16) Coda, Andrea; Sculley, Dean; Santos, Derek; Girones, Xavier; Brosseau, Lucie; Smith, Derek R.; Burns, Joshua; Rome, Keith; Munro, Jane; Singh-Grewal, Davinder
Background: Children and adolescents with Juvenile Idiopathic Arthritis (JIA) typically have reduced physical activity level and impaired aerobic and anaerobic exercise capacity when compared to their non-JIA counterparts. Low intensity exercise regimens appear to be safe in children with JIA and may results in improvements in overall physical function. Poor adherence to paediatric rheumatology treatment may lead to negative clinical outcomes and possibly increased disease activity. This includes symptoms such as pain, fatigue, quality of life, longer term outcomes including joint damage, as well as increase of healthcare associated costs. Low adherence to medications such as methotrexate and biological-drugs remains a significant issue for paediatric rheumatologists, with alarming reports that less than half of the children with JIA are compliant to drug-therapy. Main body: The recent advances in interactive technology resulting in a variety of wearable user-friendly smart devices may become a key solution to address important questions in JIA clinical management. Fully understanding the impact that arthritis and treatment complications have upon individual children and their families has long been a challenge for clinicians. Modern interactive technologies can be customised and accessed directly in the hands or wrists of children with JIA. These secured networks could be accessible 'live' at anytime and anywhere by the child, parents and clinicians. Multidisciplinary teams in paediatric rheumatology may benefit from adopting these technologies to better understand domains such as patient biological parameters, symptoms progression, adherence to drug-therapy, quality of life, and participation in physical activities. Most importantly the use of smart devices technologies may also facilitate more timely clinical decisions, improve self-management and parents awareness in the progression of their child's disease. Paediatric rheumatology research could also benefit from the use of these smart devices, as they would allow real-time access to meaningful data to thoroughly understand the disease-patterns of JIA, such as pain and physical activity outcomes. Data collection that typically occurs once every 1 or 3 months in the clinical setting could instead be gathered every week, day, minute or virtually live online. Arguably, few limitations in wearing such interactive technologies still exist and require further developments. Conclusion: Finally, by embracing and adapting these new and now highly accessible interactive technologies, clinical management and research in paediatric rheumatology may be greatly advanced.
Paediatric Preparedness: Document Analysis of the Challenges Experienced Using Smartwatch Technologies to Support Children Living with a Chronic Health Condition
(MDPI, 2025-01-21) Butler, Sonia; Sculley, Dean; Santos, Derek; Gironès, Xavier; Singh-Grewal, Davinder; Coda, Andrea
Smartwatch technology is increasingly being used to support the management of chronic health conditions. Yet, many new digital health innovations fail because the correct foundations are not well established. This exploratory study aims to uncover the challenges experienced during the setup phase of a smartwatch intervention, to support the prototype development of a digital health intervention for children. Five children with a chronic health condition were asked to wear a smartwatch for 14 days that collects health data (pain levels, medication adherence, and physical activity performance). To explore the experiences of these children, their parents and the research team, all written records were analysed using READ’s four steps of document analysis and reported using the Standards for Reporting Qualitative Research checklist. The following three themes emerged: 1.) Infrastructure limitations: inexpensive smartphones prevented connection, and outpatient clinics’ internet black spots constrained setup and training; 2.) Personal phone restrictions: limited setup, training, and engagement; 3.) Elimination of the parent’s phone: provided children with digital support (a smartphone, pre-installed apps, cellular data) to allow active participation. Overall, we identified barriers hindering the use of smartwatch technology in clinical practice. More resources are needed to ensure paediatric preparedness for digital health support.
Paediatric Rheumatology Fails to Meet Current Benchmarks, a Call for Health Equity for Children Living with Juvenile Idiopathic Arthritis, Using Digital Health Technologies
(Springer, 2024-03-11) Butler, Sonia; Sculley, Dean; Santos, Derek; Girones, Xavier; Singh-Grewal, Davinder; Coda, Andrea
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.
Physical examination tool for swollen and tender lower limb joints in juvenile idiopathic arthritis: A pilot diagnostic accuracy study
(MDPI, 2022-04-08) Fellas, Antoni; Singh-Grewal, Davinder; Chaitow, Jeffrey; Warner, Denise; Onikul, Ella; Santos, Derek; Clapham, Matthew; Coda, Andrea
Background: 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.
Physical Examination Tools Used to Identify Swollen and Tender Lower Limb Joints in Juvenile Idiopathic Arthritis: A Scoping Review
(Hindawi Publishing Corporation, 2018-05-15) Fellas, Antoni; Singh-Grewal, Davinder; Santos, Derek; Coda, Andrea
Background. 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.
Usability of eHealth and mobile health interventions by young people living with juvenile idiopathic arthritis: Systematic review
(JMIR Publications, 2020-12-01) Butler, Sonia; Sculley, Dean; Santos, Derek; Fellas, Antoni; Girones, Xavier; Singh-Grewal, Davinder; Coda, Andrea
Background: Considering the changing landscape of internet use and rising ownership of digital technology by young people, new methods could be considered to improve the current model of juvenile idiopathic arthritis (JIA) management.
Using digital health technologies to monitor pain, medication 2 adherence and physical activity in young people with Juvenile 3 Idiopathic Arthritis: feasibility study
(MDPI, 2023) Butler, Sonia; Sculley, Dean; Santos, Derek; Girones, Xavier; Singh-Grewal, Davinder; Coda, Andrea
Juvenile 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.
Using Digital Health Technologies to Monitor Pain, Medication Adherence and Physical Activity in Young People with Juvenile Idiopathic Arthritis: A Feasibility Study
(MDPI, 2024-02-02) Butler, Sonia; Sculley, Dean; Santos, Derek; Gironès, Xavier; Singh-Grewal, Davinder; Coda, Andrea
Juvenile 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.