Alegiani Anna C, Rahn Anne C, Steckelberg Anke, Thomalla Götz, Heesen Christoph, Köpke Sascha
Department of Neurology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
Department of Health Services Research, Carl von Ossietzky University Oldenburg, Oldenburg, Germany.
Front Neurol. 2020 Dec 7;11:526515. doi: 10.3389/fneur.2020.526515. eCollection 2020.
Strokes have a huge impact on patients' quality of life. Although there are potentially effective secondary preventions and treatment options for stroke patients, adherence is mostly low. Low disease and treatment-related knowledge and, consequently, a lack of informed decision-making in stroke patients may contribute to this problem. However, stroke patient information did not seem to have relevant effects on patients' knowledge in randomized controlled trials. contributing factor may be the lack of thoroughly developed patient information materials. We aimed to evaluate the quality of patient information materials for stroke patients by using randomized controlled trials, applying quality criteria for evidence-based patient information (EBPI). We conducted a literature search (MEDLINE, Embase, CINAHL, PsycINFO, and CENTRAL). To be included in the review, research had to be randomized controlled trials that provided stroke patient information, were published in English, and had knowledge assessed as the primary endpoint. Authors of primary studies were contacted and asked for information materials applied. We screened 15,507 hits and identified 30 eligible studies. Information materials were available for only eight studies. Analyses revealed that all available materials had important shortcomings concerning EBPI quality criteria [concerning, for example, structural information (e.g., reporting conflicts of interest), content information (e.g., reporting sources of information), or comprehensive descriptions of treatment effects and side effects]. Frequently, treatment effects were reported only narratively without providing absolute numbers, values, or frequencies. Quality of materials differed, but none sufficiently fulfilled EBPI quality criteria. Unsatisfactory trial results concerning patient knowledge and patient involvement in decision-making may at least partially be explained by limitations of the provided materials. Future patient information should consider EBPI quality criteria.
中风对患者的生活质量有巨大影响。尽管对于中风患者有潜在有效的二级预防和治疗选择，但依从性大多较低。中风患者疾病和治疗相关知识水平低，因此缺乏明智的决策能力，可能是导致这一问题的原因。然而，在随机对照试验中，中风患者信息似乎对患者的知识没有产生相关影响。一个促成因素可能是缺乏完善的患者信息材料。我们旨在通过随机对照试验，应用循证患者信息（EBPI）的质量标准，评估中风患者信息材料的质量。我们进行了文献检索（MEDLINE、Embase、CINAHL、PsycINFO和CENTRAL）。要纳入该综述，研究必须是提供中风患者信息、以英文发表且将知识评估作为主要终点的随机对照试验。我们联系了原始研究的作者，索要所应用的信息材料。我们筛选了15507条记录，确定了30项符合条件的研究。只有8项研究有信息材料。分析表明，所有可用材料在EBPI质量标准方面都存在重大缺陷[例如，关于结构信息（如披露利益冲突）、内容信息（如报告信息来源），或对治疗效果和副作用的全面描述]。通常，治疗效果仅以叙述方式报告，未提供绝对数字、数值或频率。材料质量各不相同，但没有一项能充分满足EBPI质量标准。关于患者知识和患者参与决策的试验结果不尽人意，这至少部分可以由所提供材料的局限性来解释。未来的患者信息应考虑EBPI质量标准。
