van der Smissen Doris, Overbeek Anouk, van Dulmen Sandra, van Gemert-Pijnen Lisette, van der Heide Agnes, Rietjens Judith Ac, Korfage Ida J
Department of Public Health, Erasmus MC, University Medical Center Rotterdam, Rotterdam, Netherlands.
Department of Criminal Law, Erasmus University Rotterdam, Rotterdam, Netherlands.
J Med Internet Res. 2020 Mar 17;22(3):e15578. doi: 10.2196/15578.
Advance care planning (ACP) is a process with the overall aim to enhance care in concordance with patients' preferences. Key elements of ACP are to enable persons to define goals and preferences for future medical treatment and care, to discuss these with family and health care professionals, and to document and review these if appropriate. ACP is usually conducted through personal conversations between a health care professional, a patient, and-if appropriate-family members. Although Web-based ACP programs have the potential to support patients in ACP, their effectiveness is unknown.
This study aimed to assess the feasibility and effectiveness of Web-based, interactive, and person-centered ACP programs.
We systematically searched for quantitative and qualitative studies evaluating Web-based, interactive, and person-centered ACP programs in seven databases including EMBASE, Web of Science, Cochrane Central and Google Scholar. Data on the characteristics of the ACP programs' content (using a predefined list of 10 key elements of ACP), feasibility, and effectiveness were extracted using a predesigned form.
Of 3434 titles and abstracts, 27 studies met the inclusion criteria, evaluating 11 Web-based ACP programs-10 were developed in the United States and one in Ireland. Studied populations ranged from healthy adults to patients with serious conditions. Programs typically contained the exploration of goals and values (8 programs), exploration of preferences for treatment and care (11 programs), guidance for communication about these preferences with health care professionals or relatives (10 programs), and the possibility to generate a document in which preferences can be recorded (8 programs). Reportedly, participants were satisfied with the ACP programs (11/11 studies), considering them as easy to use (8/8 studies) and not burdensome (7/8 studies). Designs of 13 studies allowed evaluating the effectiveness of five programs. They showed that ACP programs significantly increased ACP knowledge (8/8 studies), improved communication between patients and their relatives or health care professionals (6/6 studies), increased ACP documentation (6/6 studies), and improved concordance between care as preferred by the patients and the decisions of clinicians and health care representatives (2/3 studies).
Web-based, interactive, and person-centered ACP programs were mainly developed and evaluated in the United States. They contained the key elements of ACP, such as discussing and documenting goals and preferences for future care. As participants considered programs as easy to use and not burdensome, they appeared to be feasible. Among the 13 studies that measured the effectiveness of programs, improvement in ACP knowledge, communication, and documentation was reported. The concordance between preferred and received care is yet understudied. Studies with high-quality study designs in different health care settings are warranted to further establish the feasibility and effectiveness of Web-based ACP programs.
预先护理计划(ACP)是一个总体目标为增强与患者偏好相一致的护理的过程。ACP的关键要素是使人们能够定义未来医疗治疗和护理的目标及偏好,与家人和医疗保健专业人员讨论这些内容,并在适当情况下记录和审查这些内容。ACP通常通过医疗保健专业人员、患者以及(如有必要)家庭成员之间的个人对话来进行。尽管基于网络的ACP项目有潜力在ACP方面为患者提供支持,但其有效性尚不清楚。
本研究旨在评估基于网络、交互式且以患者为中心的ACP项目的可行性和有效性。
我们在包括EMBASE、科学网、Cochrane中心和谷歌学术在内的七个数据库中系统地搜索了评估基于网络、交互式且以患者为中心的ACP项目的定量和定性研究。使用预先设计的表格提取关于ACP项目内容特征(使用预先定义的10个ACP关键要素列表)、可行性和有效性的数据。
在3434个标题和摘要中,27项研究符合纳入标准,评估了11个基于网络的ACP项目——10个在美国开发,1个在爱尔兰开发。研究人群范围从健康成年人到患有严重疾病的患者。项目通常包含对目标和价值观的探索(8个项目)、对治疗和护理偏好的探索(11个项目)、关于与医疗保健专业人员或亲属交流这些偏好的指导(10个项目)以及生成可记录偏好的文件的可能性(8个项目)。据报道,参与者对ACP项目感到满意(11/11项研究),认为它们易于使用(8/8项研究)且不繁重(7/8项研究)。13项研究的设计允许评估5个项目的有效性。结果显示,ACP项目显著增加了ACP知识(8/8项研究),改善了患者与其亲属或医疗保健专业人员之间的沟通(6/6项研究),增加了ACP记录(6/6项研究),并改善了患者偏好的护理与临床医生和医疗保健代表的决策之间的一致性(2/3项研究)。
基于网络、交互式且以患者为中心的ACP项目主要在美国开发和评估。它们包含了ACP的关键要素,如讨论和记录未来护理的目标及偏好。由于参与者认为项目易于使用且不繁重,它们似乎是可行的。在测量项目有效性的13项研究中,报告了ACP知识、沟通和记录方面的改善。偏好护理与实际接受护理之间的一致性仍有待研究。需要在不同医疗保健环境中进行高质量研究设计的研究,以进一步确定基于网络的ACP项目的可行性和有效性。