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数字工具/电子健康支持慢性肾脏病自我管理:对中国患者和医疗保健专业人员的认知、态度和需求的定性研究。

Digital tools/eHealth to support CKD self-management: A qualitative study of perceptions, attitudes and needs of patients and health care professionals in China.

机构信息

School of Nursing, Guangzhou Medical University, Guangzhou, China; Department of Nursing, The First Affiliated Hospital of Zhengzhou University, Zhengzhou University, Zhengzhou, China.

Department of Public Health and Primary Care, Leiden University Medical Centre, Leiden, Netherlands; Department of Obstetrics and Gynaecology, Erasmus Medical Center, Rotterdam, Netherlands.

出版信息

Int J Med Inform. 2022 Sep;165:104811. doi: 10.1016/j.ijmedinf.2022.104811. Epub 2022 Jun 10.

Abstract

BACKGROUND

A growing body of evidence supports the potential effectiveness of electronic health (eHealth) self-management interventions in improving disease self-management skills and health outcomes of patients suffering from chronic kidney disease (CKD). However, current research on CKD eHealth self-management interventions has almost exclusively focused on high-income, western countries.

OBJECTIVE

To inform the adaptation of a tailored eHealth self-management intervention for patients with CKD in China based on the Dutch Medical Dashboard (MD) intervention, we examined the perceptions, attitudes and needs of Chinese patients with CKD and health care professionals (HCPs) towards eHealth based (self-management) interventions in general and the Dutch MD intervention in specific.

METHODS

We conducted a basic interpretive, cross-sectional qualitative study comprising semi-structured interviews with 11 patients with CKD and 10 HCPs, and 2 focus group discussions with 9 patients with CKD. This study was conducted in the First Affiliated Hospital of Zhengzhou University in China. Data collection continued until data saturation was reached. All data were transcribed verbatim and analyzed using a framework approach.

RESULTS

Three themes emerged: (1) experience with eHealth in CKD (self-management), (2) needs for supporting CKD self-management with the use of eHealth, and (3) adaptation and implementation of the Dutch MD intervention in China. Both patients and HCPs had experience with and solely mentioned eHealth to 'inform, monitor and track' as potentially relevant interventions to support CKD self-management, not those to support 'interaction' and 'data utilization'. Factors reported to influence the implementation of CKD eHealth self-management interventions included information barriers (i.e. quality and consistency of the disease-related information obtained via eHealth), perceived trustworthiness and safety of eHealth sources, clinical compatibility and complexity of eHealth, time constraints and eHealth literacy. Moreover, patients and HCPs expressed that eHealth interventions should support CKD self-management by improving the access to reliable and relevant disease related knowledge and optimizing the timeliness and quality of patient and HCPs interactions. Finally, suggestions to adaptation and implementation of the Dutch MD intervention in China were mainly related to improving the intervention functionalities and content of MD such as addressing the complexity of the platform and compatibility with HCPs' workflows.

CONCLUSIONS

The identified perceptions, attitudes and needs towards eHealth self-management interventions in Chinese settings should be considered by researchers and intervention developers to adapt a tailored eHealth self-management intervention for patients with CKD in China. In more detail, future research needs to engage in co-creation processes with vulnerable groups during eHealth development and implementation, increase eHealth literacy and credibility of eHealth (information resource), ensure eHealth to be easy to use and well-integrated into HCPs' workflows.

摘要

背景

越来越多的证据表明,电子健康(eHealth)自我管理干预措施在提高慢性肾脏病(CKD)患者的疾病自我管理技能和健康结果方面具有潜在效果。然而,目前针对 CKD eHealth 自我管理干预的研究几乎完全集中在高收入的西方国家。

目的

为了在中国基于荷兰医疗仪表盘(MD)干预的情况下为 CKD 患者改编定制的 eHealth 自我管理干预措施,我们调查了中国 CKD 患者和医疗保健专业人员(HCPs)对一般 eHealth 基于(自我管理)干预措施以及荷兰 MD 干预措施的看法、态度和需求。

方法

我们进行了一项基本的解释性、横断面定性研究,包括对 11 名 CKD 患者和 10 名 HCPs 进行半结构式访谈,以及对 9 名 CKD 患者进行 2 次焦点小组讨论。这项研究在中国郑州大学第一附属医院进行。数据采集一直持续到达到数据饱和。所有数据均逐字转录,并使用框架方法进行分析。

结果

出现了三个主题:(1)在 CKD(自我管理)中使用 eHealth 的经验,(2)使用 eHealth 支持 CKD 自我管理的需求,以及(3)在荷兰 MD 干预在中国的改编和实施。患者和 HCPs 都有 eHealth 的经验,并且仅将 eHealth 视为“告知、监测和跟踪”,作为支持 CKD 自我管理的潜在相关干预措施,而不是支持“交互”和“数据利用”的措施。据报道,影响 CKD eHealth 自我管理干预实施的因素包括信息障碍(即通过 eHealth 获得的疾病相关信息的质量和一致性)、对 eHealth 来源的可信度和安全性的感知、eHealth 的临床兼容性和复杂性、时间限制和 eHealth 素养。此外,患者和 HCPs 表示,eHealth 干预措施应通过改善对可靠和相关疾病知识的获取,以及优化患者和 HCPs 之间交互的及时性和质量,来支持 CKD 自我管理。最后,对在中国实施荷兰 MD 干预措施的改编和实施的建议主要与改善 MD 的干预功能和内容有关,例如解决平台的复杂性和与 HCPs 工作流程的兼容性。

结论

在中国背景下,研究人员和干预措施的开发者应考虑到对 eHealth 自我管理干预措施的看法、态度和需求,以在中国为 CKD 患者改编定制的 eHealth 自我管理干预措施。更详细地说,未来的研究需要在 eHealth 开发和实施过程中与弱势群体共同创造,提高 eHealth 素养和可信度(信息资源),确保 eHealth 易于使用并与 HCPs 的工作流程很好地集成。

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