Polillo Alexia, Voineskos Aristotle N, Foussias George, Kidd Sean A, Sav Andreea, Hawley Steve, Soklaridis Sophie, Stergiopoulos Vicky, Kozloff Nicole
Centre for Addiction and Mental Health, Toronto, ON, Canada.
Department of Psychiatry, University of Toronto, Toronto, ON, Canada.
JMIR Ment Health. 2021 May 31;8(5):e24567. doi: 10.2196/24567.
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.
在招募和留住精神病患者及其家属参与研究方面存在诸多障碍，这可能会使临床研究样本产生偏差。数字研究工具，如在线平台、移动应用程序和短信，有潜力通过促进远程参与来消除研究障碍。然而，关于利用这些技术让精神病患者及其家属参与研究的研究还很有限。
本研究的目的是评估数字工具在使患有临时精神病的患者及其家属参与研究方面的应用情况，以及他们对不同研究管理方法的偏好。
本研究使用研究电子数据采集（REDCap）——一个基于网络的安全平台，具有用于数据收集和存储的内置工具——通过短信或电子邮件向转介到早期精神病干预服务机构的患者和家属发送基于网络的同意书和关于服务参与情况的调查问卷；还亲自联系或提醒潜在参与者参与该研究。我们计算了使用远程和亲自参与方法的完成率、时间安排以及补偿偏好。
共有447名患有临时精神病的患者及其187名家属同意接收基于网络的同意书，大约一半的患者（216/447，48.3%）和家属（109/187，58.3%）同意参与调查。大多数完成同意书的患者（182/229，79.5%）和家属（75/116，64.7%）是通过远程方式完成的，亲自完成同意书的家属（41/116，35.3%）比患者（47/229，20.5%）多。在同意参与的人中，77.3%（167/216）的患者和72.5%（79/109）的家属完成了调查，且大多数是通过远程方式完成的。几乎所有患者（418/462，90.5%）和家属（174/190，91.6%）都要求通过电子邮件接收同意书和调查问卷，分别只有4.1%（19/462）和3.2%（6/190）的人更喜欢短信方式。略多于一半的患者（91/167，54.5%）和家属（42/79，53.2%）更喜欢以咖啡店的电子礼品卡作为研究补偿。大多数调查是在工作日的中午12点至下午6点之间完成的。
当提供选择时，大多数患有精神病患者及其家属选择了远程管理方法，这表明数字工具可能会提高该人群的研究招募率和参与度，特别是在新冠疫情全球大流行的背景下。
