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Social Distancing, Health Care Disruptions, Telemedicine Use, and Treatment Interruption During the COVID-19 Pandemic in Patients With or Without Autoimmune Rheumatic Disease.新冠疫情期间,患有或未患有自身免疫性风湿病患者的社交距离、医疗保健中断、远程医疗使用及治疗中断情况
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美国风湿和肌肉骨骼疾病患者优先考虑哪些教育主题和智能手机应用功能?一项混合方法研究。

Which Educational Topics and Smartphone App Functions Are Prioritized by US Patients With Rheumatic and Musculoskeletal Diseases? A Mixed-Methods Study.

机构信息

W.B. Nowell, MSW, PhD, K. Gavigan, MPH, S. Venkatachalam, MPH, PhD, L. Stradford, MPH, E. Rivera, MS, Global Healthy Living Foundation, Upper Nyack, New York.

W.B. Nowell, MSW, PhD, K. Gavigan, MPH, S. Venkatachalam, MPH, PhD, L. Stradford, MPH, E. Rivera, MS, Global Healthy Living Foundation, Upper Nyack, New York;

出版信息

J Rheumatol. 2024 Sep 1;51(9):904-912. doi: 10.3899/jrheum.2023-1021.

DOI:10.3899/jrheum.2023-1021
PMID:38749562
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11530283/
Abstract

OBJECTIVE

We sought to identify (1) what types of information US adults with rheumatic and musculoskeletal diseases (RMD) perceive as most important to know about their disease, and (2) what functions they would use in an RMD-specific smartphone app.

METHODS

Nominal groups with patients with RMD were conducted using online tools to generate a list of needed educational topics. Based on nominal group results, a survey with final educational items was administered online, along with questions about desired functions of a smartphone app for RMD and wearable use, to patients within a large community rheumatology practice-based research network and the PatientSpot registry. Chi-square tests and multivariate regression models were used to determine differences in priorities between groups of respondents with rheumatic inflammatory conditions (RICs) and osteoarthritis (OA), and possible associations.

RESULTS

At least 80% of respondents considered finding a rheumatologist, understanding tests and medications, and quickly recognizing and communicating symptoms to doctors as extremely important educational topics. The highest-ranked topic for both RIC and OA groups was "knowing when the medication is not working." The app functions that most respondents considered useful were viewing laboratory results, recording symptoms to share with their rheumatology provider, and recording symptoms (eg, pain, fatigue) or disease flares for health tracking over time. Approximately one-third of respondents owned and regularly used a wearable activity tracker.

CONCLUSION

People with RMD prioritized information about laboratory test results, medications, and disease and symptom monitoring, which can be used to create educational and digital tools that support patients during their disease journey.

摘要

目的

我们旨在确定(1)美国风湿和肌肉骨骼疾病(RMD)患者认为了解其疾病最重要的信息类型,以及(2)他们将在特定于 RMD 的智能手机应用程序中使用哪些功能。

方法

使用在线工具进行了风湿性疾病患者的名义组研究,以生成所需教育主题的列表。根据名义组的结果,向大型社区风湿病学实践基础研究网络和 PatientSpot 注册中心的患者在线提供带有最终教育项目的调查,以及有关 RMD 和可穿戴设备使用的智能手机应用程序所需功能的问题。卡方检验和多变量回归模型用于确定具有风湿性炎症性疾病(RIC)和骨关节炎(OA)的受访者群体之间在优先级方面的差异,以及可能的关联。

结果

至少有 80%的受访者认为找到风湿病专家、了解测试和药物以及快速识别和向医生传达症状是极其重要的教育主题。RIC 和 OA 组都将“了解药物何时无效”评为最高优先级的主题。大多数受访者认为有用的应用程序功能包括查看实验室结果、记录症状以与他们的风湿病专家共享,以及记录症状(例如疼痛、疲劳)或疾病发作以进行随时间的健康跟踪。大约三分之一的受访者拥有并定期使用可穿戴活动追踪器。

结论

RMD 患者优先考虑有关实验室检查结果、药物以及疾病和症状监测的信息,这些信息可用于创建教育和数字工具,以在患者的疾病旅程中为其提供支持。