Using Digital Tools to Engage Patients With Psychosis and Their Families in Research: Survey Recruitment and Completion in an Early Psychosis Intervention Program.
Using Digital Tools to Engage Patients With Psychosis and Their Families in Research: Survey Recruitment and Completion in an Early Psychosis Intervention Program.
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DOI：
10.2196/24567
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发表时间：
2021-05-31
影响因子：
5.2
通讯作者：
Kozloff N
中科院分区：
文献类型：
--
作者：
Polillo A;Voineskos AN;Foussias G;Kidd SA;Sav A;Hawley S;Soklaridis S;Stergiopoulos V;Kozloff N
招募和留住精神病患者及其家人进行研究的障碍是根深蒂固的，可能会对临床研究样本产生偏见。数字研究工具，如在线平台、移动应用程序和短信，有可能通过促进远程参与来解决研究障碍。然而，关于利用这些技术让精神病患者及其家人参与研究的研究有限。这项研究的目的是评估数字工具的使用情况，以吸引暂时性精神病患者及其家人参与研究，以及他们对不同研究管理方法的偏好。这项研究使用了研究电子数据采集(RedCap)-一个安全的基于网络的平台，具有内置的数据收集和存储工具-通过短信或电子邮件向提到早期精神病干预服务的患者和家庭发送基于网络的同意表和服务参与度调查；还亲自接触或提醒潜在参与者有关这项研究的情况。我们使用远程和面对面的方法以及补偿偏好来计算完成率和时间安排。共有447名暂时性精神病患者及其187名家属同意接受网上同意书，约半数患者(216/447，48.3%)和家属(109/187，58.3%)同意参与调查。大多数患者(182/229，79.5%)和家属(75/116，64.7%)远程填写同意书，家属(41/116，35.3%)多于亲身填写同意书的患者(47/229，20.5%)。在同意的人中，77.3%(167/216)的患者和72.5%(79/109)的家属完成了调查，大多数人远程进行调查。几乎所有患者(418/462，90.5%)和家属(174/190，91.6%)要求通过电子邮件收到同意书和调查问卷，分别只有4.1%(19/462)和3.2%(6/190)的患者首选短信。刚刚超过一半的患者(91/167，54.5%)和家属(42/79，53.2%)更喜欢从咖啡店收到电子礼品卡作为学习补偿。大多数调查是在工作日下午12点至6点之间完成的当提供选择时，大多数精神病患者及其家人选择了远程管理方法，这表明数字工具可能会加强这一群体的研究招募和参与，特别是在新冠肺炎全球大流行的背景下。
Barriers to recruiting and retaining people with psychosis and their families in research are well-established, potentially biasing clinical research samples. Digital research tools, such as online platforms, mobile apps, and text messaging, have the potential to address barriers to research by facilitating remote participation. However, there has been limited research on leveraging these technologies to engage people with psychosis and their families in research. The objective of this study was to assess the uptake of digital tools to engage patients with provisional psychosis and their families in research and their preferences for different research administration methods. This study used Research Electronic Data Capture (REDCap)—a secure web-based platform with built-in tools for data collection and storage—to send web-based consent forms and surveys on service engagement via text message or email to patients and families referred to early psychosis intervention services; potential participants were also approached or reminded about the study in person. We calculated completion rates and timing using remote and in-person methods and compensation preferences. A total of 447 patients with provisional psychosis and 187 of their family members agreed to receive the web-based consent form, and approximately half of the patients (216/447, 48.3%) and family members (109/187, 58.3%) consented to participate in the survey. Most patients (182/229, 79.5%) and family members (75/116, 64.7%) who completed the consent form did so remotely, with more family members (41/116, 35.3%) than patients (47/229, 20.5%) completing it in person. Of those who consented, 77.3% (167/216) of patients and 72.5% (79/109) of family members completed the survey, and most did the survey remotely. Almost all patients (418/462, 90.5%) and family members (174/190, 91.6%) requested to receive the consent form and survey by email, and only 4.1% (19/462) and 3.2% (6/190), respectively, preferred text message. Just over half of the patients (91/167, 54.5%) and family members (42/79, 53.2%) preferred to receive electronic gift cards from a coffee shop as study compensation. Most surveys were completed on weekdays between 12 PM and 6 PM. When offered the choice, most participants with psychosis and their families chose remote administration methods, suggesting that digital tools may enhance research recruitment and participation in this population, particularly in the context of the COVID-19 global pandemic.
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