Background Little is known about the impact of COVID-19 on patients with cystic fibrosis (CF), despite being considered a high-risk group. This study explored the early impact of COVID-19 on the emotional well-being of patients and self-reported changes in their home therapy since the start of the pandemic. Methods Adult patients with CF, lung-transplanted (LTX) CF patients and parents of children with CF completed an online questionnaire, securely linked to their medical files. The questionnaire covered the emotional impact of the pandemic, changes in CF and LTX treatment, changes in health-protecting behaviours and CF-related concerns, and their perception of their COVID-19 status. Results The response rate was 63% (80 CF, 66 LTX and 73 parents). A wide range of illness severity was included. None of the respondents had contracted COVID-19 and all strictly followed the social distancing rules. There was evident psychological impact, with many reporting increased stress, fear and worry about CF and the future. Changes in treatment were positive, including more physiotherapy for adults and better-quality nebulizing. Changes in routine were reported, such as different treatment timing. Adult patients and parents had cancelled their CF appointments more often since the start of the pandemic. Conclusions The initial psychological impact of COVID-19 was evident. The impact on home treatment was reassuringly small. Psychological care is needed for patients suffering prolonged psychological impact, and CF teams need to contextualize the information that patients and parents receive from the media and support them to balance the perceived risk with true risk.

中文翻译：

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COVID-19 大流行对比利时囊性纤维化患者（包括移植患者和儿科患者）的情绪健康和家庭治疗的影响。

背景 尽管 COVID-19 被认为是高危人群，但人们对 COVID-19 对囊性纤维化 (CF) 患者的影响知之甚少。这项研究探讨了 COVID-19 对患者情绪健康的早期影响以及自大流行开始以来他们的家庭治疗的自我报告变化。方法 成年 CF 患者、肺移植 (LTX) CF 患者和 CF 儿童的父母完成了一份在线问卷，安全地链接到他们的医疗档案。问卷涵盖了大流行的情绪影响、CF 和 LTX 治疗的变化、健康保护行为的变化和 CF 相关问题，以及他们对 COVID-19 状态的看法。结果 响应率为 63%（80 个 CF、66 个 LTX 和 73 个父母）。包括广泛的疾病严重程度。所有受访者均未感染 COVID-19，并且都严格遵守社交距离规则。有明显的心理影响，许多人报告说对 CF 和未来的压力、恐惧和担忧增加。治疗的变化是积极的，包括更多的成人理疗和更好的雾化质量。报告了常规的变化，例如不同的治疗时间。自大流行开始以来，成年患者和父母更频繁地取消他们的 CF 预约。结论 COVID-19 的初始心理影响是显而易见的。对家庭治疗的影响很小，令人放心。需要对长期遭受心理影响的患者进行心理护理，