Department of Public Health, Erasmus MC, University Medical Center Rotterdam, P.O. Box 2040, 3000, CA, Rotterdam, the Netherlands.
Department of Psychology, Health and Technology, University of Twente, Enschede, the Netherlands.
BMC Palliat Care. 2021 May 30;20(1):77. doi: 10.1186/s12904-021-00770-x.
Advance care planning (ACP) enables persons to identify preferences for future treatment and care, and to discuss, record and review these preferences. However, the uptake of ACP among patients with chronic diseases is relatively low. Web-based ACP programs can support patients and their relatives in ACP. However, information needs of patients and their relatives for ACP are unknown. The aim of this study is to explore information needs of patients with chronic disease and their relatives for web-based ACP.
We conducted semi-structured interviews with patients with chronic diseases and relatives at their home or at the study center. In three cases, the patient and relative were paired since they preferred to be interviewed together. We asked about information they would search for when to start with ACP, where they would search for information, what search terms they would use on the Internet, and what content and information they would consider important on an ACP website. The interviewer asked participants to clarify their responses during the interview. We used thematic analysis to analyze the interviewees' responses.
We interviewed nine patients with different chronic diseases including amyotrophic lateral sclerosis (ALS), multiple sclerosis (MS), chronic obstructive pulmonary disease (COPD) and kidney diseases, and seven relatives, namely partners or (adult) children. The interviewees were aged 24 to 80 years, nine were female and seven were male. Both patients with a chronic disease and relatives mentioned comparable information needs. Many interviewees indicated they would use the Internet to search for information about ACP. Mentioned search terms were "advance care planning", "treatment plan", "disease trajectory" and names of patient associations. Information needs concerned their disease trajectory and quality of life, medical treatment decisions, practical support in arranging care, the concept of ACP and guidance in ACP, communication of treatment and care preferences, peer support of others with chronic diseases, and information for relatives. Many appreciated encouragement of their healthcare providers to take a pro-active role in ACP.
We conclude that information needs for ACP included guidance in ACP, support in making decisions about medical treatment, and practical support in arranging care. We recommend adapting web-based ACP information to the information needs of patients and their relatives to increase its findability, uptake and usefulness.
预先医疗指示（advance care planning，ACP）使人们能够确定对未来治疗和护理的偏好，并讨论、记录和审查这些偏好。然而，慢性病患者接受 ACP 的比例相对较低。基于网络的 ACP 计划可以为患者及其家属提供支持。但是，患者及其家属对 ACP 的信息需求尚不清楚。本研究旨在探讨慢性病患者及其家属对基于网络的 ACP 的信息需求。
我们对家中或研究中心的慢性病患者及其家属进行了半结构化访谈。在三种情况下，由于患者和家属希望一起接受访谈，因此将他们配对。我们询问他们在开始 ACP 时会搜索哪些信息，他们会在哪里搜索信息，他们会在互联网上使用哪些搜索词，以及他们认为 ACP 网站上哪些内容和信息重要。访谈者在访谈过程中要求参与者澄清他们的回答。我们使用主题分析来分析受访者的回答。
我们采访了九位患有不同慢性病的患者，包括肌萎缩侧索硬化症（amyotrophic lateral sclerosis，ALS）、多发性硬化症（multiple sclerosis，MS）、慢性阻塞性肺疾病（chronic obstructive pulmonary disease，COPD）和肾脏疾病，以及七位家属，即伴侣或（成年）子女。受访者年龄在 24 至 80 岁之间，其中 9 位为女性，7 位为男性。患有慢性病的患者和家属都提到了类似的信息需求。许多受访者表示他们会使用互联网搜索有关 ACP 的信息。提到的搜索词包括“advance care planning”、“treatment plan”、“disease trajectory”和患者协会的名称。信息需求涉及疾病轨迹和生活质量、医疗决策、安排护理的实际支持、ACP 的概念和指导、治疗和护理偏好的沟通、慢性病患者的同伴支持，以及为家属提供信息。许多人赞赏鼓励他们的医疗保健提供者在 ACP 中发挥积极主动的作用。
我们得出的结论是，ACP 的信息需求包括 ACP 指导、治疗决策支持和护理安排的实际支持。我们建议根据患者及其家属的信息需求调整基于网络的 ACP 信息，以提高其可发现性、采用率和有用性。
