蛔虫肺内囊虫病（Alveolar echinococcosis, AE）是一种严重的寄生性人兽共患病，其临床表现与恶性肿瘤相似，主要侵犯肝脏并具有临床静默的浸润性生长。AE患者常出现高水平的心理负担和对疾病进展的恐惧。本研究旨在采用定性方法探究AE患者对疾病相关心理社会负担的观点。我们对AE患者进行了N = 12半结构化访谈，重点关注他们对疾病相关心理社会负担、应对策略、信息寻求行为和主观病理概念的看法。为此，我们邀请了之前一项定量横断面研究中的AE患者参与访谈。经过逐字转录后，我们对访谈内容进行了主题分析。分析后，数据被分为五个主要主题：A）被认知的疾病相关负担，B）应对疾病相关负担，C）疾病对他们社会环境的影响，D）面对未来与疾病，和E）与疾病相关的信息寻求行为和主观病理概念。所有参与者都认为AE是一种严重的疾病，与其生物学、心理学和社会学效应紧密相连。报道的关键积极影响包括提供信息和获得非正式和正式支持的能力，从而能够尽可能长时间地过上积极的个人和职业生活。自主、基于网络的信息寻求通常会导致更多的绝望和焦虑情绪。我们的发现强调了在AE患者管理中考虑心理社会发病率的必要性。为了减轻心理负担、缓解疾病相关的忧虑并防止污名化，健康专业人员需要向AE患者提供全面的疾病相关信息，以提高患者和社会的认识。版权所有：2023 Nikendei等人。本文为开放获取文章，根据知识共享署名许可协议，允许在任何媒介中自由使用、分发和重制，前提是原始作者和出处已被标明。

Alveolar echinococcosis (AE) is a serious parasitic zoonotic disease that resembles malignancy with clinically silent infiltrative growth predominantly involving the liver. AE patients show high levels of comorbid psychological burden and fear of disease progression. This study aimed to examine AE patients' perspective on their disease-related psychosocial burden using qualitative methods.We conducted N = 12 semi-structured interviews with AE patients focusing on their disease-related psychosocial burden, coping strategies, information seeking behavior, and subjective illness concepts. To this end, AE patients from a previous quantitative cross-sectional study were invited to participate. After verbatim transcription, interviews were analyzed thematically.After analysis, data was grouped into five main themes: A) Perceived disease-related burden, B) Coping with disease-related burden, C) Disease-related impact on their social environment, D) Facing the future with the disease, and E) Disease-related information seeking behavior and subjective illness concepts. All participants perceived AE as a severe disease with inextricably linked biological, psychological, and social effects. Key positive influences reported included the provision of information and access to informal and formal support, including the ability to lead active personal and professional lives for as long as possible. Self-directed, web-based information seeking often led to increased feelings of hopelessness and anxiety.Our findings underscore the need to consider psychosocial morbidity in AE patient management. To reduce psychological burden, address disease-related apprehensions, and to prevent stigmatization, health professionals need to provide AE patients with comprehensive disease-related information to improve patient and social awareness.Copyright: © 2023 Nikendei et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.