患者版临床实践指南的知晓、使用和认知情况——一项针对癌症患者和医疗保健提供者的全国性横断面调查。

Awareness, use and perception of patient versions of clinical practice guidelines - a national cross-sectional survey among patients with a cancer diagnosis and healthcare providers.

机构信息

AWMF (Association of the Scientific Medical Societies in Germany)-Institute for Medical Knowledge Management (IMWi), c/o Philipps-University, Marburg, Germany.

Institute for Research in Operative Medicine (IFOM), Witten/Herdecke University, Cologne, Germany.

出版信息

BMC Health Serv Res. 2024 Oct 9;24(1):1211. doi: 10.1186/s12913-024-11563-2.

DOI:10.1186/s12913-024-11563-2

PMID:39385177

原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11465693/

Abstract

BACKGROUND

To investigate awareness, use, and perceptions of the patient guidelines (PGs) of the German Guideline Program in Oncology (GGPO) and to explore general preferences regarding cancer information among patients and healthcare providers (HCPs).

METHODS

Two cross-sectional surveys among patients with cancer (November 2020-May 2021) and among HCPs (April -June 2021) were set up as anonymised, self-administered, semi-structured online surveys, including open-ended questions. Data were analysed with descriptive statistics and qualitative thematic analysis. Patients were recruited from national self-help organisations and certified cancer centres located all over Germany. HCPs were recruited from cancer centres, scientific medical societies and guideline groups.

RESULTS

Of 816 participating patients, 45% were aware of the GGPO-PGs, while 55% of the 455 participating HCPs were aware of them. Of those aware of the GGPO-PGs, 65% of patients and 86% of HCPs perceived them as helpful, while 95% in both groups saw them as comprehensive. Seventy-five percent of patients and 85% of HCPs were satisfied with the GGPO-PGs, 22%/13% were partially satisfied, and 3%/2% were rather/not at all satisfied. In addition to self-help organisations, physicians and hospitals were perceived as central in distributing the GGPO-PGs. More patients (78%) than HCPs (56%) stated a preference for detailed information, although the wish for concise information - e.g. decision aids - was concurrently expressed by the majority of all participants. Thematic analysis showed that up-to-dateness, trustworthiness, and supportive messaging are important properties for PGs.

CONCLUSIONS

HCPs found the GGPO-PGs helpful, but awareness was low, which suggests that dissemination should be improved. This is also true for patients; however, further research needs to be done to increase the helpfulness of PGs for patients. Oncological PGs seem to be needed in different formats according to patients' situational needs. Theory-driven research should investigate how to best frame patient information in a supportive way.

摘要

背景

为了调查德国肿瘤学指南计划（GGPO）患者指南（PGs）的认知、使用和认知情况，并探讨患者和医疗保健提供者（HCPs）对癌症信息的一般偏好。

方法

于 2020 年 11 月至 2021 年 5 月期间针对癌症患者开展了两项横断面调查，并于 2021 年 4 月至 6 月期间针对 HCPs 开展了两项横断面调查。这两项调查均采用匿名、自我管理、半结构化的在线调查，其中包括开放式问题。采用描述性统计和定性主题分析来分析数据。患者从德国各地的国家自助组织和认证癌症中心招募而来。HCPs 则从癌症中心、科学医学协会和指南组织招募而来。

结果

在 816 名参与的患者中，有 45%的患者了解 GGPO-PGs，而在 455 名参与的 HCPs 中，有 55%的人了解它们。在了解 GGPO-PGs 的患者中，有 65%的患者和 86%的 HCPs 认为它们有帮助，而在这两个群体中，均有 95%的人认为它们全面。75%的患者和 85%的 HCPs 对 GGPO-PGs 感到满意，22%/13%的人部分满意，3%/2%的人不太满意/不满意。除了自助组织外，医生和医院也被认为是分发 GGPO-PGs 的中心。与 HCPs（56%）相比，更多的患者（78%）表示希望获得详细的信息，尽管大多数参与者也同时表达了对简洁信息的需求，例如决策辅助工具。主题分析表明，最新性、可信度和支持性信息传递是 PGs 的重要属性。