Browsing by Person "Butler, Sonia"

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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.
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.
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.
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.