为青少年特发性关节炎患儿开发和提供综合数字医疗保健方法:可用性研究。

IF 2.1 Q2 PEDIATRICS JMIR Pediatrics and Parenting Pub Date : 2024-09-17 DOI:10.2196/56816
Sonia Butler, Dean Sculley, Derek Santos, Xavier Gironès, Davinder Singh-Grewal, Andrea Coda
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引用次数: 0

摘要

背景:幼年特发性关节炎(JIA)是一种无法治愈的慢性炎症性疾病。大多数患儿会被处方多种药物,以控制疾病活动、控制症状和减轻疼痛。此外,还鼓励进行体育锻炼,以保持肌肉骨骼功能。治疗成功的主要决定因素是长期坚持用药、儿科风湿病专家的持续监测以及跨学科团队的参与。为了支持这些目标,我们开发了一种新的数字干预措施--互动诊所,旨在促使儿童服药、报告疼痛程度并增加体育锻炼:本研究旨在评估 InteractiveClinics 在 JIA 儿童中的可用性:作为这项儿科横断面研究的一部分,12 名儿童被要求佩戴智能手表 2 周,该手表与 InteractiveClinics 手机应用和网络平台同步。每天都会向手表和手机发送个性化通知,提示并记录服药情况和疼痛程度评估。手表会自动记录体力活动。研究结束时,所有儿童和家长都填写了干预后调查表。此外,还鼓励填写书面意见,以获得更多反馈。我们使用了描述性统计来总结调查结果,并对所有定性数据进行了主题分析:12 名 10 至 18 岁的儿童(平均 14.2 岁,标准差 3.1 岁;女性:8 人,66.7%)和每名儿童的一名家长(12 人;女性:8 人,66.7%)参与了研究。根据调查中同意率最高和最低的区域,大多数儿童和家长都喜欢智能手表和网络平台;他们认为该平台易学易用。他们还对疼痛和体育锻炼模块感到满意。但是,在手机应用和药物治疗模块中发现了一些可用性和可接受性方面的障碍,这些障碍阻碍了用户的使用。儿童需要独特的应用程序内体验,他们建议的改进措施包括:在应用程序内进行更多个性化设置;删除所有与抗风湿药物无关的链接,以简化程序;灵活安排响应时间;通过游戏化改进授受性;增加评论栏,以输入更多数据,如药物副作用或与疼痛相关的症状;对体力活动模块进行更详细的图表说明,包括细分指标;重要的是,模块之间要相互关联,因为药物依从性、疼痛程度和体力活动会相互影响。总体而言,这些模块提高了对儿童和家长的实用性:互动诊所的可用性是积极的。儿童和家长都喜欢手表和网络平台,并对疼痛和体育锻炼模块感到满意。但是,儿童希望通过更多的个性化、简化、灵活性、会商、评论栏、图表说明、指标明细和互联获得独特的应用体验。当然,要促进用户采用和推进儿科风湿病学中新的有效数字健康干预措施,支持提供综合护理,还需要纳入更多内容。
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Development and Delivery of an Integrated Digital Health Care Approach for Children With Juvenile Idiopathic Arthritis: Usability Study.

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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来源期刊
JMIR Pediatrics and Parenting
JMIR Pediatrics and Parenting Medicine-Pediatrics, Perinatology and Child Health
CiteScore
5.00
自引率
5.40%
发文量
62
审稿时长
12 weeks
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