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

Butler, Sonia; Sculley, Dean; Santos, Derek; Girones, Xavier; Singh-Grewal, Davinder; Coda, Andrea

doi:10.3390/healthcare12030392

Cited by 3 publications

(2 citation statements)

References 54 publications

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“…Further, completing web-based assessments, before the Paediatric Rheumatologist consultation improved time efficiency [84] and promoted psychosocial conversation [86]. In addition, longitudinal monitoring of pain, medication adherence, and physical activity can be viewed on a web-based platform, captured through smart watch and mobile app technology [87]. However, most of this research is still at a very early stage of evaluation [83,87].…”

Section: New Emerging Models Of Digital Healthcarementioning

confidence: 99%

“…In addition, longitudinal monitoring of pain, medication adherence, and physical activity can be viewed on a web-based platform, captured through smart watch and mobile app technology [87]. However, most of this research is still at a very early stage of evaluation [83,87]. Nonetheless, it is still laying the foundations to a new model of healthcare delivery.…”

Section: New Emerging Models Of Digital Healthcarementioning

confidence: 99%

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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: New Emerging Models Of Digital Healthcarementioning

confidence: 99%

Section: New Emerging Models Of Digital Healthcarementioning

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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Protocol for a pilot study: Feasibility of a web-based platform to improve nutrition, mindfulness, and physical function in people living with Post COVID-19 condition (BLEND)

Montes-Ibarra,

Godziuk,

Thompson

et al. 2024

Methods

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Development and Delivery of an Integrated Digital Health Care Approach for Children With Juvenile Idiopathic Arthritis: Usability Study

Butler,

Sculley,

Santos

et al. 2024

JMIR Pediatr Parent

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Background Juvenile idiopathic arthritis (JIA) is a chronic inflammatory disorder with no cure. Most children are prescribed several medications aimed at controlling disease activity, managing symptoms, and reducing pain. Physical activity is also encouraged to retain musculoskeletal function. The primary determinants of treatment success are maintaining long-term adherence, ongoing monitoring by a pediatric rheumatologist, and involvement of an interdisciplinary team. To support these goals, a new digital intervention was developed, InteractiveClinics, which 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 among children with JIA. Methods As part of this pediatric cross-sectional study, 12 children were asked to wear a smartwatch for 2 weeks, which was 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 level assessment. Physical activity was automatically recorded by the watch. At the end of the study, all children and parents completed a postintervention survey. Written comments were also encouraged to gain further feedback. Descriptive statistics were used to summarize the survey results, and all qualitative data underwent thematic analysis. Results Twelve children aged 10 to 18 years (mean 14.2, SD 3.1 years; female: n=8, 66.7%) and 1 parent for each child (n=12; female: n=8, 66.7%) were enrolled in the study. Based on the highest and lowest agreement areas of the survey, most children and parents liked the smartwatch 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 that hindered uptake were identified in the phone app and medication module. Children required a unique in-app experience, and their suggestive improvements included more personalization within the app; simplification by removing all links not relevant to antirheumatic medications; 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. They were, overall, improving usefulness for children and parents. Conclusions The 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 unique in-app experience through more personalization, simplification, flexibility, conferment, comment fields, graphical illustrations, a breakdown of metrics, and interconnections. Certainly, inclusions are needed to promote user adoption and advancement of new validated digital health interventions in pediatric rheumatology, to support the delivery of integrated care.

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

Cited by 3 publications

References 54 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

Protocol for a pilot study: Feasibility of a web-based platform to improve nutrition, mindfulness, and physical function in people living with Post COVID-19 condition (BLEND)

Development and Delivery of an Integrated Digital Health Care Approach for Children With Juvenile Idiopathic Arthritis: Usability Study

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