Richter Romy, Jansen Jesse, van der Kraan Josine, Abbaspoor Wais, Bongaerts Iris, Pouwels Fleur, Vilters Celine, Rademakers Jany, van der Weijden Trudy
Department of Family Medicine, Care and Public Health Research Institute (CAPHRI), Maastricht University, Maastricht, the Netherlands.
Netherlands Patients Federation, Utrecht, the Netherlands.
Med Decis Making. 2025 Feb;45(2):143-155. doi: 10.1177/0272989X241302288. Epub 2024 Dec 14.
Patient decision aids (PtDAs) can support shared decision making. We aimed to explore how inclusive PtDAs are for people with limited health literacy (LHL) by analyzing 1) the understandability of PtDAs using established criteria, 2) how options and probabilities of outcomes are communicated, and 3) the extent to which risk communication (RC) guidelines are followed.
In a descriptive document analysis, we analyzed Dutch PtDAs available in 2021 that met the International Patient Decision Aid Standards. We developed and pilot tested a data extraction form based on key RC and health literacy literature.
Most PtDAs (151/198) met most of the understandability criteria on layout (7-8 out of 8 items) such as font size but not on content aspects (121/198 PtDAs scored 5-7 out of 12 items) such as defining medical terms. Only 31 of 198 PtDAs used a short and simple sentence structure. Most PtDAs presented 2 to 4 treatment options. Many followed RC recommendations such as the use of numerical RC strategies such as percentages or natural frequencies (160/198) and visual formats such as icon arrays (91/198). Only 10 used neutral framing (10/198). When presented, uncertainty was presented verbally (134/198) or in ranges (58/198). Four PtDAs were co-created together with patients with LHL and used only verbal RC or no RC.
Most PtDAs met most of the understandability criteria on layout, but content aspects and adherence to RC strategies can be improved. Many PtDAs used long sentences and mostly verbal RC and are therefore likely to be inappropriate for patients with LHL. Further research is needed on PtDA characteristics and RC strategies suitable for people with LHL.
Despite meeting most criteria for understandability, many of the Dutch PtDAs use long sentences, which likely impede comprehension for patients with LHL.Most of the Dutch PtDAs follow established recommendations for risk communication, with room for improvement for some strategies such as framing and a clear reference to the time frame.Overall, more research is needed to tailor PtDAs to the needs of people with LHL.
患者决策辅助工具（PtDAs）可支持共同决策。我们旨在通过分析以下方面来探讨PtDAs对健康素养有限（LHL）人群的包容性：1）使用既定标准评估PtDAs的可理解性；2）治疗选项和结果概率的传达方式；3）遵循风险沟通（RC）指南的程度。
在一项描述性文献分析中，我们分析了2021年可获取的符合国际患者决策辅助标准的荷兰语PtDAs。我们基于关键的RC和健康素养文献开发并进行了数据提取表的预测试。
大多数PtDAs（151/198）在布局的可理解性标准方面（如字体大小，8项中有7 - 8项符合）表现良好，但在内容方面（121/198的PtDAs在12项中得分为5 - 7分），如医学术语的定义方面表现欠佳。198份PtDAs中只有31份使用简短简单的句子结构。大多数PtDAs呈现2至4种治疗选项。许多PtDAs遵循RC建议，如使用百分比或自然频率等数字RC策略（160/198）以及图标阵列等视觉形式（91/198）。只有10份使用中性框架（10/198）。不确定性的呈现方式为口头表述（134/198）或范围表述（58/198）。有4份PtDAs是与LHL患者共同创建的，仅使用口头RC或不使用RC。
大多数PtDAs在布局的可理解性标准方面表现良好，但内容方面以及对RC策略的遵循情况仍可改进。许多PtDAs使用长句子且大多采用口头RC，因此可能不适用于LHL患者。需要进一步研究适合LHL人群的PtDA特征和RC策略。
尽管符合大多数可理解性标准，但许多荷兰语PtDAs使用长句子，这可能会妨碍LHL患者的理解。大多数荷兰语PtDAs遵循既定的风险沟通建议，某些策略如框架构建和明确提及时间范围仍有改进空间。总体而言，需要更多研究来使PtDAs满足LHL人群的需求。
