Quality of Life and Physical Activity in 629 Individuals With Sarcoidosis: Prospective, Cross-sectional Study Using Smartphones (Sarcoidosis App).
Quality of Life and Physical Activity in 629 Individuals With Sarcoidosis: Prospective, Cross-sectional Study Using Smartphones (Sarcoidosis App).
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DOI：
10.2196/38331
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发表时间：
2022-08-10
影响因子：
5
通讯作者：
Rosenbach, Misha
中科院分区：
文献类型：
--
作者：
Chu, Brian;O'Connor, Daniel M.;Wan, Marilyn;Barnett, Ian;Shou, Haochang;Judson, Marc;Rosenbach, Misha
关键词：
对于结节病的症状和功能影响的理解存在很大差距，结节病是一种罕见的多系统肉芽肿性疾病，在美国影响不到 200,000 人。智能手机可用于前瞻性研究，特别是对于罕见疾病，因为它们几乎无处不在，并且能够通过日益复杂的技术跟踪客观和主观数据，因此组织大型队列可能具有挑战性。我们的目的是调查智能手机是否可以评估大量结节病患者的生活质量 (QoL) 和身体活动。我们开发了一款移动应用程序（结节病应用程序），用于对结节病患者进行前瞻性横断面研究。结节病应用程序可在 Apple 和 Android 智能手机上使用。结节病患者完全在该应用程序中招募、同意和登记。对结节病病史、病史和药物进行了调查。患者完成了结节病评估工具中的模块，这是一种经过验证的患者报告的身体活动、疲劳、疼痛、皮肤症状、睡眠和肺部症状的结果评估。通过智能手机测量的身体活动被跟踪为可用的。从 2018 年 4 月到 2020 年 5 月，该应用程序被下载 2558 次，注册人数为 629 人（404 人，其中 64.2% 为女性；平均年龄 51 岁；513 人，81.6% 为白人；86 人，13.7% 为黑人）。三分之二的参与者拥有大学或研究生学位，其中一半以上的收入超过 60,000 美元。生活质量与身体活动相关（P<.001，ρ=0.250）和疲劳（P<.01，ρ=–0.203）都与智能手机跟踪的实际身体活动相关。总体而言，19.0% (98/517) 的参与者在观察的一个月内因结节病至少缺课 1 周或缺勤，44.4% (279/629) 表示财务状况“严重”或“严重”受到结节病影响。此外，71.2% (437/614) 的参与者报告服用了治疗结节病的药物，最常见的是泼尼松、甲氨蝶呤、羟氯喹和英夫利昔单抗。此外，46.4% (244/526) 报告了药物副作用，最常见的是泼尼松。我们证明，智能手机可以使用被动收集的客观数据和不需要任何面对面接触的定性调查，前瞻性地招募、同意和研究大型结节病队列中的身体活动、生活质量和药物使用情况。我们研究的局限性包括研究人群偏向于受过更多教育和更富有的个人，这表明招募并不能代表美国结节病患者的全部谱系。我们的研究为未来基于智能手机的罕见疾病临床研究提供了一个模型，并强调了对基于智能手机的罕见疾病研究感兴趣的未来研究团队应该预见的关键技术挑战。
Large gaps exist in understanding the symptomatic and functional impact of sarcoidosis, a rare multisystem granulomatous disease affecting fewer than 200,000 individuals in the United States. Smartphones could be used for prospective research, especially for rare diseases where organizing large cohorts can be challenging, given their near ubiquitous ownership and ability to track objective and subjective data with increasingly sophisticated technology. We aimed to investigate whether smartphones could assess the quality of life (QoL) and physical activity of a large cohort of individuals with sarcoidosis. We developed a mobile app (Sarcoidosis App) for a prospective, cross-sectional study on individuals with sarcoidosis. The Sarcoidosis App was made available on both Apple and Android smartphones. Individuals with sarcoidosis were recruited, consented, and enrolled entirely within the app. Surveys on sarcoidosis history, medical history, and medications were administered. Patients completed modules from the Sarcoidosis Assessment Tool, a validated patient-reported outcomes assessment of physical activity, fatigue, pain, skin symptoms, sleep, and lungs symptoms. Physical activity measured by smartphones was tracked as available. From April 2018 to May 2020, the App was downloaded 2558 times, and 629 individuals enrolled (404, 64.2% female; mean age 51 years; 513, 81.6% White; 86, 13.7% Black). Two-thirds of participants had a college or graduate degree, and more than half of them reported an income greater than US $60,000. Both QoL related to physical activity (P<.001, ρ=0.250) and fatigue (P<.01, ρ=–0.203) correlated with actual smartphone-tracked physical activity. Overall, 19.0% (98/517) of participants missed at least 1 week of school or work in an observed month owing to sarcoidosis, and 44.4% (279/629) reported that finances “greatly” or “severely” affected by sarcoidosis. Furthermore, 71.2% (437/614) of participants reported taking medications for sarcoidosis, with the most common being prednisone, methotrexate, hydroxychloroquine, and infliximab. Moreover, 46.4% (244/526) reported medication side effects, most commonly due to prednisone. We demonstrate that smartphones can prospectively recruit, consent, and study physical activity, QoL, and medication usage in a large sarcoidosis cohort, using both passively collected objective data and qualitative surveys that did not require any in-person encounters. Our study’s limitations include the study population being weighted toward more educated and wealthier individuals, suggesting that recruitment was not representative of the full spectrum of patients with sarcoidosis in the United States. Our study provides a model for future smartphone-enabled clinical research for rare diseases and highlights key technical challenges that future research teams interested in smartphone-based research for rare diseases should anticipate.
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影响因子：
7.4
作者：
Marcu, Gabriela;Ondersma, Steven J.;Spiller, Allison N.;Broderick, Brianna M.;Kadri, Reema;Buis, Lorraine R.
通讯作者：
Buis, Lorraine R.
影响因子：
8.3
作者：
Gerke, Alicia K.;Judson, Marc A.;Koth, Laura L.
通讯作者：
Koth, Laura L.
DOI：
10.1164/rccm.201410-1785oc
发表时间：
2015-04-01
影响因子：
24.7
作者：
Judson, Marc A.;Mack, Michael;Victorson, David E.
通讯作者：
Victorson, David E.
影响因子：
13.8
作者：
Weiner JP;Bandeian S;Hatef E;Lans D;Liu A;Lemke KW
通讯作者：
Lemke KW
影响因子：
2.4
作者：
Rice, J. Bradford;White, Alan;Wan, George J.
通讯作者：
Wan, George J.