
==== Front
JMIR Pediatr Parent
JMIR Pediatr Parent
JPP
pediatrics
30
JMIR Pediatrics and Parenting
2561-6722
JMIR Publications Toronto, Canada

39287603
10.2196/56816
56816
Chronic Disease Self-Management in Childhood and Adolescence
mHealth for Symptom and Disease Monitoring, Chronic Disease Management
Web-based and Mobile Health Interventions
User-centred Design Case Studies
Mobile Health (mhealth)
Internet for Rehabilitation
Co-Design & Participatory Design
Chronic Conditions
Mobile Apps for Chronic Disease Management in Childhood and Adolescence
Original Paper
Development and Delivery of an Integrated Digital Health Care Approach for Children With Juvenile Idiopathic Arthritis: Usability Study
http://orcid.org/0000-0002-5492-7966
Butler Sonia BN (Hons), GradCertTertiaryEd, MEd 1*sonia.butler@newcastle.edu.au

http://orcid.org/0000-0003-3972-8309
Sculley Dean BSc (Hons), MSc, PhD 1dean.sculley@newcastle.edu.au

http://orcid.org/0000-0001-9936-715X
Santos Derek BSc (Hons), MSc, PhD 2*dsantos@qmu.ac.uk

http://orcid.org/0000-0002-2329-5927
Gironès Xavier BSc (Hons), PhD 3*xaviergirones@gencat.cat

http://orcid.org/0000-0001-7306-3713
Singh-Grewal Davinder MBBS, MMedSci, PhD 4567*davinder.singhgrewal@health.nsw.gov.au

http://orcid.org/0000-0003-0427-6672
Coda Andrea BSc (Hons), PhD 89*andrea.coda@newcastle.edu.au

1 School of Bioscience and Pharmacy, College of Health, Medicine and Wellbeing, University of Newcastle, Ourimbah, Australia
2 School of Health Sciences, Queen Margaret University, Edinburgh, United Kingdom
3 Department of Research and Universities, Generalitat de Catalunya, Government of Catalonia, Barcelona, Spain
4 Department of Rheumatology, Sydney Children's Hospitals Network, Randwick and Westmead, Sydney, Australia
5 Discipline of Child and Adolescent Health, University of Sydney, Sydney, Australia
6 School of Women’s and Children’s Health, University of New South Wales, Sydney, Australia
7 Department of Rheumatology, John Hunter Children’s Hospital, Newcastle, Australia
8 School of Health Sciences, College of Health, Medicine and Wellbeing, University of Newcastle, Ourimbah, Australia
9 Equity in Health and Wellbeing Research Program, Hunter Medical Research Institute, Newcastle, Australia
Badawy Sherif
SoniaButlerBN (Hons), GradCertTertiaryEd, MEd, School of Bioscience and Pharmacy, College of Health, Medicine and Wellbeing, University of Newcastle, 10 Chittaway Rd, Ourimbah, 2258, Australia, 61 421945914; sonia.butler@newcastle.edu.au
* these authors contributed equally

None declared.

2024
17 9 2024
7 e5681618 2 2024
25 4 2024
22 5 2024
Copyright © Sonia Butler, Dean Sculley, Derek Santos, Xavier Gironès, Davinder Singh-Grewal, Andrea Coda. Originally published in JMIR Pediatrics and Parenting (https://pediatrics.jmir.org)
2024
https://creativecommons.org/licenses/by/4.0/ This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Pediatrics and Parenting, is properly cited. The complete bibliographic information, a link to the original publication on https://pediatrics.jmir.org, as well as this copyright and license information must be included.

Abstract

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.

Keywords

phone app
smart watch
juvenile idiopathic arthritis
pain
medication adherence
physical activity
integrated care
medication
development
usability study
chronic inflammatory disorder
children
child
usability
survey
thematic analysis
gamification
modules
web-based platform
support
==== Body
pmcIntroduction

Overview

Globally, more than 3 million children are currently living with the autoimmune disorder juvenile idiopathic arthritis (JIA) [12]. JIA is the broad term used to describe a heterogeneous group of 7 inflammatory disorders, all of which have an unknown origin that begins in children younger than 18 years [34]. The commonality between these disorders is joint inflammation and pain [56]. Prolonged exposure to this inflammation can cause serious widespread complications for a child, such as impaired growth [78], delayed pubertal development [89], premature cardiovascular disease [10], and organ damage [11]. Ongoing exposure to pain can induce permanent changes in the nervous system, increasing pain sensitivity and the continuance of persistent pain in adulthood [612]. Regrettably, there is no cure. Instead, a “treat to target“ approach is used to induce clinical remission or lower disease activity [13]. The aim is to normalize and preserve joint function, prevent growth retardation, maintain physical function, and avoid permanent disability [714], ultimately improving the child’s quality of life [15].

Background

Medications

For most children, the first line of treatment includes the aggressive use of medications, for a prolonged period of time, because the therapeutic response to gain disease control and symptom relief is slow [1617]. Typically, these medications include disease-modifying antirheumatic medications (such as methotrexate, sulphasalazine, and leflunomide) in combination with corticosteroids to target inflammation. In addition, ibuprofen and naproxen can ease the pain and further calm the swelling [141618]. However, adhering to a strict medication schedule can be difficult for many children due to the need to take multiple medications of varying doses, by different routes of administration (oral, intravenous, and intra-articular) [141619] and on different days at different times, to limit the medications’ side effects on well-being [20]. An example is administering disease-modifying antirheumatic medications on a Friday night, to ensure the associated nausea and brain fog do not interfere with school performance. Therefore, reliable monitoring of a child’s medication adherence by a pediatric rheumatologist is crucial to ensure they are gaining the full therapeutic response and alleviating any side effects they may experience [21].

Pain Level Monitoring

Pain is often one of the first JIA-related symptoms experienced by a child. Pain begins at an early stage of the disease trajectory when a child’s joints begin to swell and become restricted. It is at this early stage that a child’s pain perception can be permanently altered [612] because pain activates changes in the central and peripheral neural pathways, decreasing a child’s pain threshold [22] and increasing sensitization [12]. This means pain can persist despite good disease control [623] and become widespread throughout the body, such as in both the affected and unaffected knee [24]. Understandably, it is essential that pain fluctuations for JIA are meticulously monitored, and appropriate treatments quickly initiated to achieve pain-free remission [1215].

Physical Activity

Exercise is prescribed for children with JIA because of the abundant health benefits [25]. Exercise helps to retain musculoskeletal function and muscle strength [26], cardio-respiratory health, a healthy weight, and good mental health [27]. Yet, children are often not motivated to exercise because of their symptoms, such as chronic synovial joint inflammation, erythema, pain, stiffness, limited range of movement, and fatigue [28]. However, this motivation does not change when there is no pain and good disease control [29]. Perhaps this is because many children and parents are under the belief that exercise will exacerbate symptoms [25], when the reverse is true, exercise can promote alleviation. In fact, a recent systematic review reported no adverse events related to exercise [25].

Importantly, there are also many non–JIA-related reasons why children do not exercise. They simply do not enjoy it, have too little time, or need parental support to attend exercise programs [30] or pay for the ongoing costs associated with attending [31]. Undeniably, in order to improve the current low adherence rates for children with JIA (40%‐47%) [3233], a new, cost-effective way is needed to promote and maintain a regular exercise regime.

Interdisciplinary Team

To achieve the best possible outcomes for children with JIA, children need access to a diverse interdisciplinary team that works in conjunction with the pediatric rheumatologist, child, and parents [34-36]. Services from allied health can include physiotherapy, occupational therapy, and podiatry to support physical function and pain [36-38], while nursing can support medication adherence through education and demonstration of injection techniques [36]. Importantly, this support also needs to be maintained for an extended period of time [39], and ongoing monitoring of the child is needed to ensure treatment success [37].

Digital Health

Recent advances in smart technology have the potential to support chronic disease management [4041] by improving treatment adherence, recording symptoms, and monitoring health behaviors [42]. For JIA, digital health innovations could be adopted to prompt medication adherence, record pain levels, and improve physical activity. These are 3 key areas that can lead to poor outcomes. Research to date on eHealth and mobile health (mHealth) interventions for JIA has predominantly focused on electronic pain diaries and web-based programs [43]. These electronic pain diaries have used personal digital assistants [44], Apple iPods, and computers [45], while web-based programs have focused on providing education and skills to promote chronic disease management, cognitive behavior [46], physical activity [47], peer support [48], and improved quality of life [49]. Overall, feasibility and usability studies have revealed that these forms of interventions are readily accepted by children [4546]. They find this technology easy to use and navigate [50] and need little training because they are already using the internet and mobile technology in their day-to-day life [5152]. In fact, in Australia, 81% of children over 14 years and 55% between 10 and 13 years own a mobile phone [5354]. Internationally, 18%‐43% of children aged between 13 and 17 years and 7%‐45% of children aged 6‐12 years own a smartwatch [55], with a predicted rate that will substantially increase over the next few years [56].

InteractiveClinics

InteractiveClinics is an innovative digital health web-based platform aimed at supporting digital health research. It was developed by academics from the University of Newcastle, Australia, and the University of Manresa (Catalonia) Spain, with IT support from BitGenoma Ltd Digital Solutions. For JIA, InteractiveClinics was used to prompt and monitor the 3 modifiable risk factors associated with poor JIA-related outcomes—medication adherence, pain levels, and physical activity—by using a commercially available smartwatch, a customized phone app, and a password-protected Australian web server. To further address the ethical and privacy issues related to data safety, all data collected by the app and web-based platform was managed in accordance with the University of Newcastle’s Information Security Data Classification and Handling Manual, and the Privacy Management Plan. The cost of development for the platform, app, and important server protection was approximately Aus $75,000 (US $48,000).

Objectives

The aim of this study is to evaluate the usability and acceptability of InteractiveClinics among children (aged 10‐18 years) by determining if the intervention is (1) easy to use, (2) acceptable, and (3) useful [5758].

Methods

Study Overview

This study was part of a cross-sectional study, following the World Health Organization’s 6-stage step-up approach to develop a digital health intervention. These steps start from monitoring the intervention’s functionality and fidelity through to evaluating feasibility, usability, efficacy, and effectiveness [58], allowing improvements to be put into place after each stage of testing and improving the quality of the intervention [59].

This study focuses on evaluating InteractiveClinics’ usability to support the development of a user-centered design, because the success of an intervention is dependent on whether intended end users engage with the intervention [58]. For 2 weeks, children and parents gained hands-on experience using InteractiveClinics and then completed a postintervention survey. To ensure detailed analysis, survey questions were based on a quantitative descriptive and qualitative design, to invite participants to answer questions in their own words [60].

Recruitment of Participants

As part of this pediatric cross-sectional study, children were recruited through 2 pediatric rheumatology outpatient clinics within 2 tertiary children’s hospitals in Australia. The eligibility criteria included an age range of 10 to 18 years, a diagnosis of JIA, and good comprehension of the English language. The exclusion criteria included a cognitive impairment, physical disability, or visual impairment that would affect the child’s ability to understand or use smart technology.

Ethical Considerations

Ethics approval for this study was granted by the Hunter New England Research Ethics Committee (approval no: 2019/ETH01035). To ensure informed consent, all potential participants were provided with an information sheet, explaining the study’s purpose, expectations, and how all data collected will be deidentified. Additionally, all study participants were informed that they could withdraw from the study at any time, without discrimination, by simply not completing the survey. In total, 12 children and 12 parents agreed to participate in the study, provided signed consent, and completed the anonymous survey between September and November 2022 (Table 1).

Table 1. Participants’ demographics.

Demographics	Values	
JIA subtype a , n (%)	
	Polyarthritis (rheumatoid factor [Rh] negative)	5 (41.7)	
	Oligoarthritis	4 (33.3)	
	Enthesitis related	1 (8.3)	
	Polyarthritis (Rh positive)	1 (8.3)	
	Psoriatic	1 (8.3)	
Medications, n (%)	
	DMARDsb	5 (41.7)c	
	bDMARDsd	2 (16.7)	
	NSAIDse	5 (41.7)	
	Corticosteroids	3 (25)	
	Pain relievers	7 (58)	
	Folic acid	1 (8.3)	
Disease duration (years), mean (range)	4.9 (5 months to 10 years)	
a Juvenile idiopathic arthritis (JIA) subtypes based on the International League of Associations for Rheumatology criteria [3].

b DMARD: disease-modifying antirheumatic drug.

c One participant was prescribed both DMARDs and bDMARDs.

d bDMARD: biological disease-modifying antirheumatic drug.

e NSAID: nonsteroidal anti-inflammatory drug.

Intervention

InteractiveClinics aims to motivate children to take their medication, record their pain, and increase their participation in physical activity. Personalized notifications were sent daily to the smartwatch and phone, to prompt and record medication adherence (Figure 1) and complete a pain level assessment within the app (Figure 2). Physical activity was automatically recorded by simply wearing the watch.

InteractiveClinics presents these 3 key areas of monitoring as 3 modules—medication adherence, pain level, and physical activity level—which can be monitored daily, weekly, or monthly by the child within the app (Figures1 3) or on a secure, password-locked, web-based platform by the child, parents/caregiver, pediatric rheumatologist, and health care team (Figure 4).

Pain levels were recorded on the validated electronic visual analog scale (eVas) module [61-63]. eVas uses a simple horizontal line with defined pain limits. The left end point indicates “without pain,” and the right end point indicates “worst possible pain” (Figure 2). This reporting scale has been found to be highly reliable and consistent with the original paper-based visual analog scale [61-63].

Figure 1. Weekly example of medication adherence responses.

Figure 2. Recording pain level on the electronic visual analogue scale module.

Figure 3. Weekly example of real-time pain levels.

Figure 4. Data communication supporting an integrative model of care for juvenile idiopathic arthritis.

Materials

The materials supplied to support participation in the intervention were as follows: a smartwatch (Apple Watch series 3, with a water-resistance rating of 50 meters, to support low-intensity activities such as swimming [64]), a smartphone (Apple iPhone, SE, 2016, loaded with Aus $30 [US $20.01] worth of pre-paid credit), the InteractiveClinics app (preset on the iPhone), and a personal password (to access the data collected on the secure web-based platform).

The persuasive influences used to promote the adoption of the intervention were as follows [43]: training (for 15 minutes on how to use the smartwatch, InteractiveClinics app, and web-based platform), an instruction manual, ongoing technical support, ongoing human communication (researcher contact details [SB] were placed in the phone), goals set by the user (for the physical activity module), personal reminders (daily personal notification sent to the watch and phone, at a time preselected by child, to prompt and record medication administration and pain level assessment), and a reactive feedback loop (for the physical activity module).

A more detailed description of InteractiveClinics has been provided in an earlier feasibility study [59].

Data Collection

InteractiveClinics’ usability and acceptability were measured through a postintervention survey. Two surveys were developed to collect feedback from children and their parents after they used the digital intervention for 2 weeks. Survey questions were adapted from the System Usability Scale [6566], to ensure the survey questions encompassed the unique multimodal approach being used by InteractiveClinics. Further, to enable younger children to complete the survey without help from their parents, age-appropriate language was used.

For the parents, survey responses were based on the 1-to-5 Likert scale (1=strongly disagree, 2=disagree, 3=unsure, 4=agree, and 5=strongly agree). For children, survey responses were based on the visual face scale [66].

Written comments were also encouraged by children and parents throughout the survey, in a free-text format, to identify any unmet inclusions; to illustrate important points; and, importantly, to facilitate a user-friendly design.

Data Analysis

Quantitative Data Analysis

Descriptive statistics were used to summarize participants’ demographic characteristics. For the survey results, a percentage agreement was used to place the data into 2 independent judgments, to allow the examination of either agreement or disagreement [67]. Commonly agreed included the responses “strongly agree” and “agree,” and commonly disagreed included the responses “unsure,” “disagree,” and “strongly disagree.” This form of data analysis focuses on reporting the proportion of answers that agree, by calculating them as a percentage [68]. These percentages can then be easily compared because there is a common denominator.

Qualitative Data Analysis

For all the qualitative data, this study used thematic analysis. This is an inductive approach used to examine themes and patterns within the data [69]. Coding began by clustering together small descriptive segments to expose both the strengths and weaknesses of InteractiveClinics. Then collectively, mutual patterns emerged forming latent themes, allowing the child’s and their parent’s experience to be heard.

To ensure rigor at all stages of interpretation, codes were continually checked to ensure they retained their original meaning, and trustworthiness and clinical relevance were enhanced by all members of our research team. Final results were internally reviewed, and data saturation was reached, drawing no more conclusions.

Results

Child Survey Feedback

The response rate to the survey among children was 100% (12/12). Most children (9/12, 75%) also completed the survey without any help from their parents. The results of the quantitative section of the survey are presented in Table 2.

Table 2. Quantitative survey results: child version (n=12).

Child survey questions	Smartwatch, n (%) agree	App, n (%) agree	Web-based platform, n (%) agree	
Usability	
	Easy to learn	12 (100)	6 (50)	7 (58.3)	
	Simple to use	12 (100)	8 (66.7)	9 (75)	
	Felt comfortable using the…	11 (92)	8 (66.7)	8 (66.7)	
	Quick to use	9 (75)	9 (75)	10 (83.3)	
	Information clear and well organized	8 (67)	6 (50)	7 (58.3)	
Acceptability	
	I liked the…	9 (75)	3 (25)	8 (66.7)	
	Was fun	9 (75)	0 (0)	2 (16.7)	
	Was useful	10 (83)	5 (41.7)	6 (50)	
	Satisfied with…	9 (75)	6 (50)	6 (50)	
	Would recommend to other young people with arthritis	10 (83)	5 (41.7)	5 (41.7)	

Smartwatch

Based on the highest and lowest agreement areas of the survey, the results support using a smartwatch as part of the intervention. The watch was easy to learn (12/12, 100%) and simple to use (12/12, 100%), and the information was useful (10/12, 83%). However, only 8 children reported the information was clear and organized (8/12, 67%). Written feedback also identified children were “expecting the App to open in the watch.” Instead they “could not answer anything on the watch.” Children wanted an expandable notification with a reply action, to allow their medication administration and pain levels to be directly recorded from the watch.

Phone App

In comparison to the smartwatch, problems were identified within the phone app.

Although the perceived usability of the app was reported as simple (8/12, 66.7%) and quick (9/12, 75%), only half of the participants found learning to use the app easy (6/12, 50%). Furthermore, only a small number of children liked the app (3/12, 25%), and none described the app as fun (0/12, 0%), impairing acceptability. Written feedback revealed participants were seeking a unique in-app experience through demographic “personalisation.”

Web-Based Platform

The usability of the web-based platform was reported as simple (9/12, 75%) and quick (10/12, 83.3%). However, only 7 participants reported it was easy to learn (7/12, 58.3%). Similar to the app, only half of the participants reported the platform as useful (6/12, 50%) or were satisfied (6/12, 50%). Further, only 2 participants reported the platform to be fun (2/10, 16.7%). Written feedback resulted in the following theme: interconnections. Participants wanted to see a comparison between the 3 modules, medication adherence, pain levels, and physical activity, to explore if any relationships exist. A participant explained the following: “has the potential to be helpful if I could access the physical activity [and medication adherence] results in line with my pain” (child 7).

Parent Survey Feedback

The response rate to the survey among parents was 100% (12/12). The results of the quantitative section of the survey are presented in Table 3.

Table 3. Quantitative survey results: parent version (n=12).

Parents survey questions	Smartwatch, n (%) agree	App, n (%) agree	Web-based platform, n (%) agree	
Easy to learn	11 (91.7)	8 (66.7)	7 (58.3)	
Simple to use	11 (91.7)	9 (75)	8 (66.7)	
Comfortable in supporting my child	11 (91.7)	11 (91.7)	10 (83.3)	
Supporting my child was quick	10 (83.3)	8 (66.7)	8 (66.7)	
I did not need to prompt my child	7 (58.3)	5 (41.7)	3 (25)	
My child was independent	9 (75)	8 (66.7)	5 (41.7)	
Information is clear and well organized	10 (83.3)	8 (66.7)	7 (58.3)	
The system is error-free	10 (83.3)	3 (25)	10 (83.3)	

Smartwatch

Most parents’ responses supported the usability and acceptability of the smartwatch. Parents reported the watch was easy to learn (11/12, 91.7%) and simple to use (11/12, 91.7%). However, only 9 parents reported children could independently use the watch (9/12, 75%), and 7 parents did not need any prompting (7/12, 58.3%). No written feedback for improvement was recorded.

Phone App

Most parents felt comfortable supporting their child (11/12, 91.7%) and agreed using the app was simple (9/12, 75%). However, only a small number of parents did not need to prompt their child to use the app (5/12, 41.7%), or found the system error-free (3/12, 25%).

I don’t think the app is working properly. [parent 5]

To improve the app, written feedback suggested simplification, to ensure the app directly aligned with their child’s needs. A parent explained the following: “simplified interface by removal of unnecessary buttons” (parent 6).

Web-Based Platform

Parents reported that they were comfortable in supporting their child when using the platform (10/12, 83.3%), and found the system to be error-free (10/12, 83.3%). However, less than half reported that their child could independently use the platform (5/12, 41.7%), and only 3 parents did not need to prompt their child (3/12, 25%). Suggested improvements included “improving the activity rings [for the physical activity module]” (parent 3).

Modules Within the App

Medication Adherence Module

Child Usability

Half of the participants agreed medication reminders were helpful (6/12, 50%), sent at the right time (6/12, 50%), and not bothersome (7/12, 58.3%). There were also no reported adverse events (12/12, 100%).

Child Acceptability

Less than half of the participants were satisfied with the medication module (5/12, 41.7%). Even less agreed that the response list was clear (2/12, 16.7%). Only 3 children would continue to use the medication module (3/12, 25%). Suggestions for improvement included flexibility. Rather than asking the research team to update their medications, children wanted to “self-change medication times [within the app]” (child 2) and “add or remove medications [within the app]” (child 12).

Parent Satisfaction

Parents were also not satisfied with the medication module (5/12, 41.7%), resulting in the following theme: comment fields. They wanted to see a broader range of data collected that aligned with their child’s needs. For example:

add comment fields to record medication symptoms such as nausea from Methotrexate, headaches from Humira, exhaustion and brain fog. [parent 9]

Pain Level Module

Overview

Children agreed recording pain was helpful (8/12, 66.7%), how to record their pain was clear (10/12, 83.3%), and responding to the pain reminders was not bothersome (7/12, 58.3%). There were also no adverse events reported (12/12, 100%). However, less than half were satisfied (4/12, 33.3%) and would continue using the pain module (6/12, 50%). Children were underwhelmed by the eVas response to their pain. When they entered their pain level on the numerical line and pressed confirm, only the numerical value between 0 and 10 emerged, describing their pain.

When you put your pain in nothing happens. [child 1]

This resulted in the following theme: conferment. Children suggested that the pain score should include gamification or the use of “visual aids, which may be of benefit.”

Similar to the feedback from the medication module, children also wanted flexibility. Although pain scores could be added at any time in the app, children wanted to be able to self-adjust their pain-reporting notification time within the app.

I wanted to change my pain time. [child 5]

Parent Satisfaction

Most parents were satisfied with the pain module (8/12, 66.7%). However, parents expressed, again, wanting to “record” additional information. Further supporting the comment fields theme, this would allow them to document “joint/s the pain is in” (parent 3) and “potential contributing factors for pain such as weather, over-exertion” (parent 9).

Physical Activity Module

Child Usability

Children were overall satisfied with the physical activity module (9/12, 75%). Most followed (8/12, 66.7%) and understood their physical activity levels (8/12, 66.7%) and agreed that the module increased their physical activity (7/12, 58.3%).

Child Acceptability

Half the children agreed that recording their physical activity was helpful (6/12, 50%) and would like to continue using the physical activity intervention (6/12, 50%). No adverse events were reported (12/12, 100%).

Written feedback suggesting how to improve this module included a graphical illustration. Children reported they needed more graphical representation of their daily and weekly physical activity levels.

Have the physical activity show more details [child 1]

Parent Satisfaction

More than half of the parents were satisfied with the physical activity module (7/12, 58.3%), and their feedback on improvements aligned with children, suggesting more details, such as “a break-down of metrics” (parent 7).

Overall Satisfaction With InteractiveClinics

Overall, most children found all the information on InteractiveClinics easy to understand (9/12, 75%). However, only 5 children reported that the information collected met their needs (5/12, 41.7%), and 4 children reported that it would support their doctor with their care (4/12, 33.3%).

In contrast, most parents felt InteractiveClinics was appropriate to address their child’s needs (10/12, 83.3%). They found the information useful (8/12, 66.7%) in supporting their understanding of the effects JIA had on their child (8/12, 66.7%) and would use InteractiveClinics again (6/12, 50%). Importantly, 7 parents reported that InteractiveClinics would support their child in their next pediatric rheumatology consultation (7/10, 58.3%).

We found the App very useful. My child required no prompting to record her pain levels and it was good for me to understand her level of pain.

[parent 6]

I think it will be very useful in the future.

[parent 4]

Summing up the feedback on all key areas in InteractiveClinics, participants wanted a unique in-app experience (Figure 5).

Figure 5. Coding tree representing the analyzed content.

Discussion

Principal Findings

This study sought to evaluate the usability and acceptability of InteractiveClinics for children (aged 10 to 18 years) living with JIA. A unique feature of InteractiveClinics is the multimodal approach it uses to support the 3 key management areas in JIA treatment: medication adherence, pain, and the retention of physical activity. InteractiveClinics was supported through a commercial smartwatch, customized phone app, and web-based platform.

This study exposed both the strengths and weaknesses of InteractiveClinics. Most children and their parents liked the watch and web-based platform, finding it easy to learn and simple to use. They were satisfied with the pain and physical activity module, and no adverse events were reported. However, there was also the need for improvements. Children identified usability and acceptability barriers that hindered uptake, particularly in the phone app. This finding is important because user feedback can be vastly different from how the intervention was planned to be used [70]. To improve InteractiveClinics, children wanted a unique in-app experience through more personalization, simplification, flexibility, conferment, comment fields, graphical illustrations, a breakdown of metrics, and interconnections.

Suggestive Improvements

The importance of personalization is that it provides children with choice, autonomy, and ownership when using technology [71]. This is achieved by enabling children to customize the app features to suit their needs [72] and providing more feedback, on an individual level [73].

Parents also requested more simplification by removing all the buttons that were not relevant to their child. Other studies have also requested removing any complexities. DeForte et al [74], for example, reported children only wanted simple buttons. This would also support a child with a disability or low level of literacy, improving their ability to navigate the app [75].

In addition, the app needed to be more flexible. Children wanted to be able to change their medication response times within the app, earlier or later than the previously selected notification times given to the research team (SB). Rather than being reliant on the research team to update their medications, they wanted to adjust the response times to work around their activities. Interestingly, a systematic review of medication apps for adults, reported that the main components that foster medication adherence were reminders and importantly, medication-tracking histories [76]. Therefore, future changes will be made to InteractiveClinics to provide users control over their notification reminders, to ensure an accurate medication history is recorded.

Further, children wanted more from the pain module; instead of the numerical scale confirming their pain recording, they wanted more exciting conferment. In contrast, children with cancer pain in a phone app study requested the numerical scale instead of the pediatric face scale using smiley faces [77]. Therefore, it was not surprising then when children suggested more engaging gamification. Yet, very few studies have considered gamification mechanics as part of their pain assessment, despite the evidence suggesting they are liked and can increase motivation [78]. Indeed, this is certainly an area in need of further research.

There was also an overwhelming response from parents to include comment fields to record additional information such as medication-induced side effects. This is important because a recent study identified that two-thirds of children with JIA, within 1 year of diagnosis, experience side effects that have an impact on their life [79]. Understandably, concerns about these side effects can result in the termination of their treatment, posing the risk of increasing disease activity [80]. Therefore, it is imperative for InteractiveClinics to collect detailed input from children on what occurs between pediatric rheumatology appointments, to gain a more comprehensive overview of disease activity and adverse events [81], enabling timely re-evaluation and mitigation strategies to be put into place, rather than merely relying on the assessment of pain and active joint count at each visit [82]. Permitting suitable changes to treatment such as prescribing folate to reduce methotrexate-induced nausea [178384] or brain fog [85], changing the route of administration [1784], splitting doses, or altering the rate of absorbency [20] can reduce the risk of disease burden and further polypharmacy in adulthood [19].

For the physical activity module, children reported wanting more graphical illustrations representing their physical activity. According to the World Health Organization, children between the ages of 10 to 18 years are in a phase of life between childhood and adulthood where health behavior can be greatly influenced. Therefore, they are in need of age-appropriate comprehensive information [86], as they are active agents in their own development [87]. A similar study that used an activity tracker, app, and web-based profile also reported the need for more detailed feedback. Children, instead of a similar traffic light system, wanted the see the actual step count [88] (in other words, the breakdown of metrics).

To improve the app and web-based platforms’ usefulness, children also wanted to see interconnections between the medication adherence module, pain level module, and physical activity module to, for example, determine the impact pain or medications may have on physical activity levels. This is important because each of these modifiable risk factors can affect another [1549]. Demonstrating a correlation between this information could also be useful for the pediatric rheumatology team to better understand disease progression or remission, therefore facilitating adjustments to treatment accordingly, and also to avoid the impact JIA can have on development, physical function, and health-related quality of life [1549].

Clinical Importance

An important clinical finding in this study was parental endorsement. Parents, in contrast to children, felt InteractiveClinics was useful in addressing their child’s problems by helping them understand the effects JIA had on their children. This is an important finding because parents’ narratives of their child’s condition often remain unmet [89]. By gaining self-awareness, the parent may gain a more insightful understanding of their child’s status on treatment that may be interfering with their progress [89]. In addition, parents then examine their own views and behaviors that can also contribute either positively or negatively to their child’s health outcomes, because children are observational learners [90]. For example, a parent’s fear and catastrophizing can result in protective behaviors and avoidance of treatments, therefore impairing their child’s functional ability [90], suggesting the importance of digital health care in educating and empowering parents.

Overall, the children and parents included in this study, through their own lived experience, were incredible collaborators in improving the usability of InteractiveClinics, greatly extending our understanding of the unique needs of children with JIA. This is important, as there is criticism toward the current “treat to target” approach used in JIA management. Children and their parents are often not included when formulating treatment plans [82]. Yet, their goals of treatment are often different from those of the Pediatric Rheumatology teams because they are focused more on the present, rather than the long impact of the disease [82], emphasizing the importance digital health care can have in supporting child-centered and family-centered care [91].

Limitations

There are several limitations that need to be considered when interpreting this study’s findings. First, this study only recruited a small convenience sample of 12 children and 12 parents, limiting generalizability. Although a small sample size (>10 participants) is typically used for usability testing[58], the suggestive inclusion to improve InteractiveClinics may not be representative of all children with JIA. Therefore, to overcome sampling bias, a larger, more diverse participant sample is needed across different demographic and geographical locations in the next stage of testing.

Also, due to the nature of this usability and acceptability study, consenting participants were actively prompted to be critical and provide written feedback on how the proposed digital health intervention could be improved. This may have limited the provision of any positive attributes.

In addition, the written feedback they provided may have not been as detailed as expected for thematic analysis. Patterns did emerge, and data saturation was reached; however, there was still a risk of research bias [69], so all authors internally reviewed and rereviewed emerging codes and themes against the original text during all stages of analysis.

Further Research

Further research is now needed to examine the potential challenges and limitations of incorporating InteractiveClinics into clinical practice. First, this research needs to focus on device access and digital literacy, because this study supplied all the equipment needed to participate and provided ongoing technical support. Second, the level of engagement and length of adherence among participants using the intervention needs to be considered, to clearly understand whether digital health care is an effective and sustainable intervention to support chronic disease management for children and their families.

A comparative analysis is also needed to compare InteractiveClinics to other digital health interventions targeting pediatric chronic disease. This would help with positioning the intervention within the broader digital health landscape and identifying any unique benefits that may be offered over existing tools, in order to find supportive and effective digital health solutions.

Interestingly, for JIA, 2 recent systematic reviews identified no similar digital health interventions that have used a multimodal approach to support chronic disease management [4392]. In fact, most interventions were still at an early stage of development [43], and heterogeneity exists, making it difficult to compare their effectiveness [92]. Instead, the findings of these reviews helped to identify 3 specific areas that are needed in JIA management—symptom monitoring, physical activity promotion, and self-management development [92]—which were used to support the development of the 3 modules included in InteractiveClinics: pain level, physical activity level, and medication adherence. It is also important to note that no studies directly targeted medication adherence [4392], yet early aggressive pharmacological treatment and the monitoring of side effects are keystones in JIA treatment [91].

Now, the future direction of InteractiveClinics is to use the feedback gained from the children and parents within this study to improve the usability of the intervention. The World Health Organization clearly reinforces the importance of doing this before commencing costly trials [58]. Then, the next step is to test the intervention’s efficacy and effectiveness [58]. This will be achieved through conducting a pilot randomized controlled trial, which will remove the sampling bias identified in this study and determine the intervention’s effectiveness on health outcomes for children with JIA and children living with other chronic conditions.

Conclusion

Most children and their parents liked using 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 modules. However, usability and acceptability barriers that hindered uptake were identified in the phone app and medication module. Children sought a unique in-app experience, and their suggestive improvements included more personalization within the app; simplification by removing all nonrelevant 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 the modules, because medication adherence, pain levels, and physical activity can each influence the other. Further research is now needed to ensure these inclusions are combined with standardized comprehensive assessments and evidence-based behavior change strategies to promote user adoption and advancement of new, validated digital health interventions in pediatric rheumatology clinical care.

Acknowledgments

All authors contributed to the conceptual design, methodology, data extraction, manuscript development, and final manuscript approval.

Abbreviations

eVas electronic visual analog scale

JIA juvenile idiopathic arthritis

mHealth mobile health
==== Refs
References

1. Dave M Rankin J Pearce M Foster HE Global prevalence estimates of three chronic musculoskeletal conditions: club foot, juvenile idiopathic arthritis and juvenile systemic lupus erythematosus Pediatr Rheumatol Online J Jun 12 2020 18 1 49 doi 10.1186/s12969-020-00443-8 Medline 32532304
2. Al-Mayouf SM Al Mutairi M Bouayed K et al Epidemiology and demographics of juvenile idiopathic arthritis in Africa and Middle East Pediatr Rheumatol Online J Dec 2 2021 19 1 166 doi 10.1186/s12969-021-00650-x Medline 34857004
3. Petty RE Southwood TR Manners P et al International League of Associations for Rheumatology classification of juvenile idiopathic arthritis: second revision, Edmonton, 2001 J Rheumatol Feb 2004 31 2 390 392 Medline 14760812
4. Martini A Ravelli A Avcin T et al Toward new classification criteria for juvenile idiopathic arthritis: first steps, Pediatric Rheumatology International Trials Organization international consensus J Rheumatol Feb 2019 46 2 190 197 doi 10.3899/jrheum.180168 Medline 30275259
5. Heckert SL Hissink-Muller PCE van den Berg JM et al Patterns of clinical joint inflammation in juvenile idiopathic arthritis RMD Open Mar 2023 9 1 e002941 doi 10.1136/rmdopen-2022-002941 36927851
6. de Lalouvière LLH Ioannou Y Fitzgerald M Neural mechanisms underlying the pain of juvenile idiopathic arthritis Nat Rev Rheumatol Apr 2014 10 4 205 211 doi 10.1038/nrrheum.2014.4 24492386
7. McErlane F Carrasco R Kearsley-Fleet L et al Growth patterns in early juvenile idiopathic arthritis: results from the Childhood Arthritis Prospective Study (CAPS) Semin Arthritis Rheum Aug 2018 48 1 53 60 doi 10.1016/j.semarthrit.2017.11.002 Medline 29217290
8. Wong SC Dobie R Altowati MA Werther GA Farquharson C Ahmed SF Growth and the growth hormone-insulin like growth factor 1 axis in children with chronic inflammation: current evidence, gaps in knowledge, and future directions Endocr Rev Feb 2016 37 1 62 110 doi 10.1210/er.2015-1026 Medline 26720129
9. d’Angelo DM Di Donato G Breda L Chiarelli F Growth and puberty in children with juvenile idiopathic arthritis Pediatr Rheumatol Online J Mar 12 2021 19 1 28 doi 10.1186/s12969-021-00521-5 Medline 33712046
10. Hussain KS Gulati R Satheesh S Negi VS Early-onset subclinical cardiovascular damage assessed by non-invasive methods in children with juvenile idiopathic arthritis: analytical cross-sectional study Rheumatol Int Feb 2021 41 2 423 429 doi 10.1007/s00296-020-04689-z Medline 32857280
11. Law H Kelly A Teoh L 22. systemic onset juvenile idiopathic arthritis with multi-organ failure in a teenager Rheumatol Adv Pract Sep 1 2019 3 Supplement_1 rkz027.006 doi 10.1093/rap/rkz027.006
12. Arnstad ED Iversen JM Uglem M et al Pain sensitivity in young adults with juvenile idiopathic arthritis: a quantitative sensory testing study Arthritis Res Ther Nov 5 2020 22 1 262 doi 10.1186/s13075-020-02345-2 Medline 33153493
13. Ravelli A Consolaro A Horneff G et al Treating juvenile idiopathic arthritis to target: recommendations of an international task force Ann Rheum Dis Jun 2018 77 6 819 828 doi 10.1136/annrheumdis-2018-213030 Medline 29643108
14. Barut K Adrovic A Şahin S Kasapçopur Ö Juvenile idiopathic arthritis Balkan Med J Apr 5 2017 34 2 90 101 doi 10.4274/balkanmedj.2017.0111 Medline 28418334
15. Tollisen A Selvaag AM Aulie HA et al Physical functioning, pain, and health-related quality of life in adults with juvenile idiopathic arthritis: a longitudinal 30-year followup study Arthritis Care Res 05 2018 70 5 741 749 doi 10.1002/acr.23327
16. Jacobson JL Pham JT Juvenile idiopathic arthritis: a focus on pharmacologic management J Pediatr Health Care 2018 32 5 515 528 doi 10.1016/j.pedhc.2018.02.005 Medline 30177013
17. Rapoff MA Lindsley CB Improving adherence to medical regimens for juvenile rheumatoid arthritis Pediatr Rheumatol Online J 05 18 2007 5 10 doi 10.1186/1546-0096-5-10 Medline 17550635
18. Giancane G Consolaro A Lanni S Davì S Schiappapietra B Ravelli A Juvenile idiopathic arthritis: diagnosis and treatment Rheumatol Ther Dec 2016 3 2 187 207 doi 10.1007/s40744-016-0040-4 Medline 27747582
19. Montag LJ Horneff G Hoff P et al Medication burden in young adults with juvenile idiopathic arthritis: data from a multicentre observational study RMD Open Oct 2022 8 2 e002520 doi 10.1136/rmdopen-2022-002520 Medline 36283758
20. Mori M Naruto T Imagawa T et al Methotrexate for the treatment of juvenile idiopathic arthritis: process to approval for JIA indication in Japan Mod Rheumatol 2009 19 1 1 11 doi 10.1007/s10165-008-0123-3 Medline 18815725
21. Zaripova LN Midgley A Christmas SE Beresford MW Baildam EM Oldershaw RA Juvenile idiopathic arthritis: from aetiopathogenesis to therapeutic approaches Pediatr Rheumatol Online J Aug 23 2021 19 1 135 doi 10.1186/s12969-021-00629-8 Medline 34425842
22. Leegaard A Lomholt JJ Thastum M Herlin T Decreased pain threshold in juvenile idiopathic arthritis: a cross-sectional study J Rheumatol 07 2013 40 7 1212 1217 doi 10.3899/jrheum.120793 Medline 23637324
23. Learoyd AE Sen D Fitzgerald M The pain trajectory of juvenile idiopathic arthritis (JIA): translating from adolescent patient report to behavioural sensitivity in a juvenile animal model Pediatr Rheumatol Online J Aug 27 2019 17 1 60 doi 10.1186/s12969-019-0360-3 Medline 31455369
24. Mensink MO Eijkelkamp N Veldhuijzen DS Wulffraat NM Feasibility of quantitative sensory testing in juvenile idiopathic arthritis Pediatr Rheumatol Online J Aug 9 2022 20 1 63 doi 10.1186/s12969-022-00715-5 Medline 35945540
25. Iversen MD Andre M von Heideken J Physical activity interventions in children with juvenile idiopathic arthritis: a systematic review of randomized controlled trials Pediatric Health Med Ther 2022 13 115 143 doi 10.2147/PHMT.S282611 Medline 35444485
26. Kuntze G Nesbitt C Whittaker JL et al Exercise therapy in juvenile idiopathic arthritis: a systematic review and meta-analysis Arch Phys Med Rehabil 01 2018 99 1 178 193 doi 10.1016/j.apmr.2017.05.030 Medline 28729171
27. Okely AD Salmon J Vella S et al A systematic review to update the Australian physical activity guidelines for children and young people Research Online - University of Wollongong 2012 URL https://ro.uow.edu.au/cgi/viewcontent.cgi?referer=&httpsredir=1&article=2245&context=sspapers Accessed 10-12-2023
28. Porth C Gaspard KJ Essentials of Pathophysiology [Electronic Resource]: Concepts of Altered Health States Wolters Kluwer 2015
29. Bohr AH Nielsen S Müller K Karup Pedersen F Andersen LB Reduced physical activity in children and adolescents with juvenile idiopathic arthritis despite satisfactory control of inflammation Pediatr Rheumatol Online J Dec 10 2015 13 57 doi 10.1186/s12969-015-0053-5 Medline 26653716
30. Sims-Gould J Race DL Macdonald H et al “I just want to get better”: experiences of children and youth with juvenile idiopathic arthritis in a home-based exercise intervention Pediatr Rheumatol Online J Sep 20 2018 16 1 59 doi 10.1186/s12969-018-0273-6 Medline 30236145
31. Kuvaja-Köllner V Lintu N Lindi V et al Cost-effectiveness of physical activity intervention in children - results based on the Physical Activity and Nutrition in Children (PANIC) study Int J Behav Nutr Phys Act Sep 6 2021 18 1 116 doi 10.1186/s12966-021-01181-0 Medline 34488794
32. Houghton KM Macdonald HM McKay HA et al Feasibility and safety of a 6-month exercise program to increase bone and muscle strength in children with juvenile idiopathic arthritis Pediatr Rheumatol Online J Oct 22 2018 16 1 67 doi 10.1186/s12969-018-0283-4 Medline 30348221
33. Len CA Miotto e Silva VB Terreri M Importance of adherence in the outcome of juvenile idiopathic arthritis Curr Rheumatol Rep Apr 2014 16 4 410 doi 10.1007/s11926-014-0410-2 Medline 24504596
34. Davies K Cleary G Foster H Hutchinson E Baildam E British Society of Paediatric and Adolescent Rheumatology BSPAR Standards of Care for children and young people with juvenile idiopathic arthritis Rheumatology (Oxford) 07 2010 49 7 1406 1408 doi 10.1093/rheumatology/kep460 Medline 20173199
35. Model of care for the NSW Paediatric Rheumatology Network ACI NSW Agency for Clinical Innovation 2013 URL https://aci.health.nsw.gov.au/__data/assets/pdf_file/0011/183656/HS13-027_ACI_PaedRheum_web.pdf Accessed 17-02-2024
36. Fingerhutova S Saifridova M Vranova M et al Is there an evidence for the role of multidisciplinary team in the management of active juvenile idiopathic arthritis? Pediatr Rheumatol Sep 2014 12 S1 P177 doi 10.1186/1546-0096-12-S1-P177
37. Oommen PT Strauss T Baltruschat K et al Update of evidence- and consensus-based guidelines for the treatment of juvenile idiopathic arthritis (JIA) by the German Society of Pediatric and Juvenile Rheumatic Diseases (GKJR): new perspectives on interdisciplinary care Clin Immunol Dec 2022 245 109143 doi 10.1016/j.clim.2022.109143 Medline 36191738
38. Fellas A Singh-Grewal D Chaitow J Santos D Clapham M Coda A Effect of preformed foot orthoses in reducing pain in children with juvenile idiopathic arthritis: a multicentre randomized clinical trial Rheumatology (Oxford) 05 30 2022 61 6 2572 2582 doi 10.1093/rheumatology/keab765 Medline 34648003
39. de Oliveira RJ Londe AC de Souza DP Marini R Fernandes PT Appenzeller S Physical activity influences health-related quality of life in adults with juvenile idiopathic arthritis J Clin Med 01 18 2023 12 3 771 doi 10.3390/jcm12030771 Medline 36769423
40. Coda A Sculley D Santos D et al Harnessing interactive technologies to improve health outcomes in juvenile idiopathic arthritis Pediatr Rheumatol Online J 05 16 2017 15 1 40 doi 10.1186/s12969-017-0168-y Medline 28511689
41. Mosa ASM Yoo I Sheets L A systematic review of healthcare applications for smartphones BMC Med Inform Decis Mak 07 10 2012 12 1 67 doi 10.1186/1472-6947-12-67 Medline 22781312
42. Reeder B David A Health at hand: a systematic review of smart watch uses for health and wellness J Biomed Inform Oct 2016 63 269 276 doi 10.1016/j.jbi.2016.09.001 27612974
43. Butler S Sculley D Santos DS et al Usability of eHealth and mobile health interventions by young people living with juvenile idiopathic arthritis: systematic review JMIR Pediatr Parent Dec 1 2020 3 2 e15833 doi 10.2196/15833 Medline 33258786
44. Stinson JN Petroz GC Stevens BJ et al Working out the kinks: testing the feasibility of an electronic pain diary for adolescents with arthritis Pain Res Manag 2008 13 5 375 382 doi 10.1155/2008/326389 Medline 18958308
45. Stinson JN Connelly M Jibb LA et al Developing a standardized approach to the assessment of pain in children and youth presenting to pediatric rheumatology providers: a Delphi survey and consensus conference process followed by feasibility testing Pediatr Rheumatol Online J Apr 10 2012 10 1 7 doi 10.1186/1546-0096-10-7 Medline 22490427
46. Armbrust W Bos JJFJ Cappon J et al Design and acceptance of Rheumates@Work, a combined internet-based and in person instruction model, an interactive, educational, and cognitive behavioral program for children with juvenile idiopathic arthritis Pediatr Rheumatol Online J 07 23 2015 13 31 doi 10.1186/s12969-015-0029-5 Medline 26202161
47. Armbrust W Bos GJFJ Wulffraat NM et al Internet program for physical activity and exercise capacity in children with juvenile idiopathic arthritis: a multicenter randomized controlled trial Arthritis Care & Res 07 2017 69 7 1040 1049 doi 10.1002/acr.23100 Medline 27696793
48. Stinson J Ahola Kohut S Forgeron P et al The iPeer2Peer program: a pilot randomized controlled trial in adolescents with juvenile idiopathic arthritis Pediatr Rheumatol Online J Sep 2 2016 14 1 48 doi 10.1186/s12969-016-0108-2 Medline 27590668
49. Haverman L Grootenhuis MA van den Berg JM et al Predictors of health-related quality of life in children and adolescents with juvenile idiopathic arthritis: results from a web-based survey Arthritis Care Res (Hoboken) 05 2012 64 5 694 703 doi 10.1002/acr.21609 Medline 22238240
50. Stinson JN McGrath PJ Hodnett ED et al An internet-based self-management program with telephone support for adolescents with arthritis: a pilot randomized controlled trial J Rheumatol Sep 2010 37 9 1944 1952 doi 10.3899/jrheum.091327 Medline 20595280
51. Park E Kwon M Health-related internet use by children and adolescents: systematic review J Med Internet Res Apr 3 2018 20 4 e120 doi 10.2196/jmir.7731 Medline 29615385
52. Villanti AC Johnson AL Ilakkuvan V Jacobs MA Graham AL Rath JM Social media use and access to digital technology in US young adults in 2016 J Med Internet Res Jun 7 2017 19 6 e196 doi 10.2196/jmir.7303 Medline 28592394
53. Hughes C Ownership and/or access to devices among children in Australia in 2020, by age group Statista 2024 URL https://www.statista.com/statistics/1260418/australia-access-to-devices-among-children-by-age-group/ Accessed 01-02-2024
54. Lonergan Research Australian Community Attitudes to Privacy Survey 2020 Office of the Australian Information Commissioner: Australian Goverment 2020 URL https://www.oaic.gov.au/__data/assets/pdf_file/0015/2373/australian-community-attitudes-to-privacy-survey-2020.pdf Accessed 01-02-2024
55. Nissen K Children in the US tend to have tablets; in China, they have smartwatches S&P Global Market Intellegence Nov 29 2023 URL https://www.spglobal.com/marketintelligence/en/news-insights/research/children-in-the-us-tend-to-have-tablets-in-china-they-have-smartwatches Accessed 18-02-2024
56. Kids smartwatch market 2021: report overview Allied Market Research 2021 URL https://www.alliedmarketresearch.com/kids-smartwatch-market-A13141 Accessed 01-02-2024
57. Materia F Downs D Smyth J Conceptualizing acceptability in mhealth research Presented at 6th Biannual Meeting of the Society for Ambulatory Assessment Jun 19-22, 2019 Syracuse, NY
58. World Health Organization Monitoring and Evaluating Digital Health Interventions: A Practical Guide to Conducting Research and Assessment World Health Organization 2016 ISBN 9789241511766
59. Butler S Sculley D Santos D Girones X Singh-Grewal D Coda A Using digital health technologies to monitor pain, medication adherence and physical activity in young people with juvenile idiopathic arthritis: a feasibility study Healthcare (Basel) Feb 2 2024 12 3 392 doi 10.3390/healthcare12030392 Medline 38338277
60. Hadler P The effects of open-ended probes on closed survey questions in web surveys Sociol Method Res 05 2023 0 004912412311768 doi 10.1177/00491241231176846
61. Escalona-Marfil C Coda A Ruiz-Moreno J Riu-Gispert LM Gironès X Validation of an electronic visual analog scale mHealth tool for acute pain assessment: prospective cross-sectional study J Med Internet Res Feb 12 2020 22 2 e13468 doi 10.2196/13468 Medline 32049063
62. Maarj M Pacey V Tofts L Clapham M Gironès Garcia X Coda A Validation of an electronic visual analog scale app for pain evaluation in children and adolescents with symptomatic hypermobility: cross-sectional study JMIR Pediatr Parent Oct 26 2022 5 4 e41930 doi 10.2196/41930 Medline 36287606
63. Turnbull A Sculley D Escalona-Marfil C et al Comparison of a mobile health electronic visual analog scale app with a traditional paper visual analog scale for pain evaluation: cross-sectional observational study J Med Internet Res Sep 17 2020 22 9 e18284 doi 10.2196/18284 Medline 32940621
64. About Apple Watch water-resistance Apple Inc 2023 URL https://support.apple.com/en-au/HT205000 Accessed 01-02-2023
65. Brooke J SUS: a quick and dirty usability scale Usability Eval Ind Nov 30 1995 189 URL https://digital.ahrq.gov/sites/default/files/docs/survey/systemusabilityscale%2528sus%2529_comp%255B1%255D.pdf Accessed 04-09-2024
66. System Usability Scale (SUS) Usability.gov URL https://www.usability.gov/how-to-and-tools/methods/system-usability-scale.html Accessed 01-02-2022
67. Roach JD Intercoder reliability techniques: percent agreement Allen M The SAGE Encyclopedia of Communication Research Methods Vol 4 SAGE Publications Inc 2017 252 URL https://methods.sagepub.com/reference/the-sage-encyclopedia-of-communication-research-methods/i6953.xml Accessed 04-09-2024
68. Burns MK How to establish interrater reliability Nursing Oct 2014 44 10 56 58 doi 10.1097/01.NURSE.0000453705.41413.c6 Medline 25232985
69. Braun V Clarke V Using thematic analysis in psychology Qual Res Psychol 01 2006 3 2 77 101 doi 10.1191/1478088706qp063oa
70. Barnum CM Usability Testing Essentials: Ready, Set...Test! Morgan Kaufmann Publishers 2011 URL http://ppdi.stmik-banjarbaru.ac.id/data.bc/100.%20Other/2011%20Usability%20Testing%20Essentials.pdf Accessed 04-09-2024 ISBN 9780123750921
71. Kearney M Schuck S Burden K Aubusson P Viewing mobile learning from a pedagogical perspective Res Learn Tech Feb 3 2012 20 1 14406 doi 10.3402/rlt.v20i0.14406
72. Anderson K Burford O Emmerton L Mobile health apps to facilitate self-care: a qualitative study of user experiences PLoS One 2016 11 5 e0156164 doi 10.1371/journal.pone.0156164 Medline 27214203
73. Allen LN Christie GP The emergence of personalized health technology J Med Internet Res 05 10 2016 18 5 e99 doi 10.2196/jmir.5357 Medline 27165944
74. DeForte S Sezgin E Huefner J et al Usability of a mobile app for improving literacy in children with hearing impairment: focus group study JMIR Hum Factors 05 28 2020 7 2 e16310 doi 10.2196/16310 Medline 32205305
75. Johnson RW White BK Gucciardi DF Gibson N Williams SA Intervention mapping of a gamified therapy prescription app for children with disabilities: user-centered design approach JMIR Pediatr Parent Aug 9 2022 5 3 e34588 doi 10.2196/34588 Medline 35943782
76. Pérez-Jover V Sala-González M Guilabert M Mira JJ Mobile apps for increasing treatment adherence: systematic review J Med Internet Res Jun 18 2019 21 6 e12505 doi 10.2196/12505 Medline 31215517
77. Hanghøj S Boisen KA Hjerming M Elsbernd A Pappot H Usability of a mobile phone app aimed at adolescents and young adults during and after cancer treatment: qualitative study JMIR Cancer 01 2 2020 6 1 e15008 doi 10.2196/15008 Medline 31895046
78. Jibb LA Stevens BJ Nathan PC et al Perceptions of adolescents with cancer related to a pain management app and its evaluation: qualitative study nested within a multicenter pilot feasibility study JMIR Mhealth Uhealth Apr 6 2018 6 4 e80 doi 10.2196/mhealth.9319 Medline 29625951
79. Chédeville G McGuire K Cabral DA et al Parent-reported medication side effects and their impact on health-related quality of life in children with juvenile idiopathic arthritis Arthritis Care Res (Hoboken) Oct 2022 74 10 1567 1574 doi 10.1002/acr.24610 Medline 33787074
80. Horton DB Salas J Wec A et al Making decisions about stopping medicines for well-controlled juvenile idiopathic arthritis: a mixed-methods study of patients and caregivers Arthritis Care Res (Hoboken) Mar 2021 73 3 374 385 doi 10.1002/acr.24129 Medline 31880862
81. Miller VA Involving youth with a chronic illness in decision-making: highlighting the role of providers Pediatrics Nov 2018 142 Suppl 3 S142 S148 doi 10.1542/peds.2018-0516D Medline 30385620
82. Schoemaker CG Swart JF Wulffraat NM Treating juvenile idiopathic arthritis to target: what is the optimal target definition to reach all goals? Pediatr Rheumatol Online J Apr 16 2020 18 1 34 doi 10.1186/s12969-020-00428-7 Medline 32299430
83. Falvey S Shipman L Ilowite N Beukelman T Methotrexate-induced nausea in the treatment of juvenile idiopathic arthritis Pediatr Rheumatol Online J Jun 19 2017 15 1 52 doi 10.1186/s12969-017-0180-2 Medline 28629458
84. Ferrara G Mastrangelo G Barone P et al Methotrexate in juvenile idiopathic arthritis: advice and recommendations from the MARAJIA expert consensus meeting Pediatr Rheumatol Online J 07 11 2018 16 1 46 doi 10.1186/s12969-018-0255-8 Medline 29996864
85. Wen J Maxwell RR Wolf AJ Spira M Gulinello ME Cole PD Methotrexate causes persistent deficits in memory and executive function in a juvenile animal model Neuropharmacology Sep 1 2018 139 76 84 doi 10.1016/j.neuropharm.2018.07.007 Medline 29990472
86. Adolescent health World Health Organization 2024 URL https://www.who.int/health-topics/adolescent-health#tab=tab_1 Accessed 06-01-2024
87. National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division; Division of Behavioral and Social Sciences and Education; Board on Children, Youth, and Families; Committee on the Neurobiological and Socio-behavioral Science of Adolescent Development and Its Applications Adolescent development Backes EP Bonnie RJ The Promise of Adolescence: Realizing Opportunity for All Youth National Academies Press (US) 2019 URL https://www.ncbi.nlm.nih.gov/books/NBK545476/ Accessed 04-09-2024
88. Ridgers ND Timperio A Brown H et al Wearable activity tracker use among Australian adolescents: usability and acceptability study JMIR Mhealth Uhealth Apr 11 2018 6 4 e86 doi 10.2196/mhealth.9199 Medline 29643054
89. Corey JR Heathcote LC Mahmud F et al Longitudinal narrative analysis of parent experiences during graded exposure treatment for children with chronic pain Clin J Pain Apr 1 2021 37 4 301 309 doi 10.1097/AJP.0000000000000921 Medline 33555695
90. Simons LE Smith A Kaczynski K Basch M Living in fear of your child’s pain: the Parent Fear of Pain Questionnaire Pain Apr 2015 156 4 694 702 doi 10.1097/j.pain.0000000000000100 Medline 25630026
91. Butler S Sculley D Santos D Gironès X Singh-Grewal D Coda A Paediatric rheumatology fails to meet current benchmarks, a call for health equity for children living with juvenile idiopathic arthritis, using digital health technologies Curr Rheumatol Rep Jun 2024 26 6 214 221 doi 10.1007/s11926-024-01145-w Medline 38466514
92. Butler S Sculley D Santos D et al Effectiveness of eHealth and mHealth interventions supporting children and young people living with juvenile idiopathic arthritis: systematic review and meta-analysis J Med Internet Res Feb 2 2022 24 2 e30457 doi 10.2196/30457 Medline 35107431
