Bakker Mark Matthijs, Luttikhuis Tess, Putrik Polina, Jansen Isabelle, Rademakers Jany, de Wit Maarten, Boonen Annelies
Department of Internal Medicine, Division of Rheumatology, Maastricht UMC, PO Box 5800, 6202 AZ, Maastricht, The Netherlands.
CAPHRI Care and Public Health Research Institute, Maastricht University, Maastricht, The Netherlands.
BMC Rheumatol. 2022 Sep 7;6(1):52. doi: 10.1186/s41927-022-00283-x.
The rapid spread of COVID-19 required swift action to provide people with rheumatic and musculoskeletal diseases (RMDs) with reliable information. People with limited health literacy constitute a vulnerable group that might have difficulty accessing, understanding and applying health information, particularly in times of crisis.
This study explored (a) key aspects of crisis communication and (b) explicit consideration of people's health literacy needs in communication to people with RMDs during the first wave of COVID-19 in the Netherlands.
We conducted a convergent, qualitatively driven mixed-methods study comprising seven qualitative interviews with professional representatives of organisations responsible for information provision to people with RMDs, and quantitative analysis of 15 patient information materials distributed by these organisations. The study was guided by principles of crisis communication and health literacy. We assessed understandability and actionability of information materials using the Dutch version of the Patient Education Materials Assessment Tool (PEMAT, resulting in a percentage of quality criteria met), and language difficulty level using an online application (assessing difficult words, jargon, passive, complex and long sentences, long paragraphs, and difficulty levels according to the Common European Framework of Reference for Languages (CEFR, from A1 (basic) to C2 (proficient))).
Respondents reported lack of preparedness, challenges related to scientific uncertainty and reaching the target group, difficulty simplifying information, and uncertainty regarding adequacy of the communication approach. Patient information materials (written and video) showed variation in actionability (range 60-100%) and understandability (range 58-100%), and 69% of written materials were too difficult, mostly due to the use of long sentences and difficult words. The quantitative findings were in coherence with the limitations in communication reported by respondents. Several potential improvements were formulated in 'lessons learned'.
Although rheumatology organisations mostly adhered to principles of crisis communication and made efforts to adapt information to their audience's needs, we propose recommendations to improve preparedness, strategy, content, reach and consideration of health literacy needs in future crisis communication.
新冠病毒病（COVID-19）的迅速传播要求迅速采取行动，为患有风湿性和肌肉骨骼疾病（RMD）的人群提供可靠信息。健康素养有限的人群是弱势群体，他们在获取、理解和应用健康信息方面可能存在困难，尤其是在危机时期。
本研究探讨了（a）危机沟通的关键方面，以及（b）在荷兰第一波新冠疫情期间，在与患有RMD的人群沟通时对其健康素养需求的明确考量。
我们开展了一项以质性研究为主导的收敛性混合方法研究，包括对负责向患有RMD的人群提供信息的组织的专业代表进行7次质性访谈，以及对这些组织分发的15份患者信息材料进行定量分析。该研究以危机沟通和健康素养原则为指导。我们使用荷兰版的患者教育材料评估工具（PEMAT，得出符合质量标准的百分比）评估信息材料的易懂性和可操作性，并使用在线应用程序评估语言难度水平（评估难词、行话、被动语态、复杂和长句子、长段落以及根据欧洲共同语言参考标准（CEFR，从A1（基础）到C2（精通））的难度级别）。
受访者报告缺乏准备、与科学不确定性及接触目标群体相关的挑战、简化信息困难以及沟通方式是否充分存在不确定性。患者信息材料（书面和视频）在可操作性（范围为60%-100%）和易懂性（范围为58%-100%）方面存在差异，69%的书面材料难度过大，主要原因是使用了长句子和难词。定量研究结果与受访者报告的沟通局限性一致。在“经验教训”中提出了一些潜在的改进措施。
尽管风湿病组织大多遵循危机沟通原则，并努力使信息适应受众需求，但我们提出了一些建议，以在未来的危机沟通中提高准备程度、策略、内容、覆盖面并考虑健康素养需求。
