Supplementary Material for: How informed are German patients with pulmonary sarcoidosis about their disease?

Background Sarcoidosis is a multisystemic disease with a heterogenous course of disease. Comprehensive information about the complexity and treatment indications are essential for improving patient knowledge and adhering to therapy. Objectives The aim of our study was to investigate the level and resources of information in patients with sarcoidosis, and to analyse differences in patient subgroups including age and gender. Methods We conducted a questionnaire-based online survey in Germany, and three semi-structured focus group interviews. The interviews were evaluated independently by two investigators using a structured qualitative content analysis. Results A total of 402 completed questionnaires were analysed, 65.8% of participants were women, and the mean age was 53 years. The majority of patients felt well informed about their disease in general (59.4%), but 40.6% were inadequately informed. The most relevant information gaps related to the future perspective (70.6%) as well as fatigue and diffuse pain (63.9%). Most patients received information from their treating pulmonologist (72.1%). 94% used the internet, especially homepages of patient support groups (75.2%). Male participants more often reported being well informed about their disease, and were more satisfied with the information (p= 0.001). During the interviews, patients expressed their wish for more comprehensive information, and highlighted the importance of psychological co-care as well as the future perspective. Conclusions A relevant proportion of patients with sarcoidosis are inadequately informed about their own disease, particularly with regard to factors impeding quality of life such as fatigue. Efforts are needed to improve the level and quality of information.

背景 结节病（Sarcoidosis）是一种多系统疾病，病程具有异质性。全面掌握该病的复杂特征与治疗指征，对于提升患者的疾病认知水平、强化治疗依从性至关重要。
研究目的 本研究旨在调查结节病患者的疾病信息知晓水平与信息获取渠道，并分析不同年龄、性别患者亚组间的认知差异。
研究方法 本研究在德国开展了一项基于问卷的线上调查，并实施了3场半结构化焦点小组访谈。由2名研究人员采用结构化定性内容分析法，独立对访谈资料进行分析评估。
研究结果 本研究共纳入402份有效完成的问卷进行分析，参与者中女性占比65.8%，平均年龄为53岁。多数患者自述对自身疾病整体认知良好（59.4%），但仍有40.6%的患者存在认知不足的情况。最突出的信息缺口集中于疾病远期预后（70.6%）以及疲劳与弥漫性疼痛相关知识（63.9%）。多数患者的疾病信息来源于接诊肺科医师（72.1%）。94%的患者会使用互联网获取相关信息，其中75.2%会查阅患者支持团体的官方主页。男性参与者自述对疾病认知良好的比例更高，且对信息获取的满意度也更高（p=0.001）。访谈过程中，患者表达了对更全面疾病信息的需求，并强调了心理协同照护与疾病远期预后相关知识的重要性。
研究结论 相当比例的结节病患者对自身疾病认知不足，尤其是在疲劳等影响生活质量的相关知识方面。亟需采取措施提升患者的疾病信息知晓水平与信息服务质量。