The impact of the COVID-19 pandemic on the emotional well-being and home treatment of Belgian patients with cystic fibrosis, including transplanted patients and paediatric patients.
The impact of the COVID-19 pandemic on the emotional well-being and home treatment of Belgian patients with cystic fibrosis, including transplanted patients and paediatric patients.
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DOI：
10.1016/j.jcf.2020.07.022
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发表时间：
2020-11
期刊：
影响因子：
--
通讯作者：
Dupont L
中科院分区：
文献类型：
--
作者：
Havermans T;Houben J;Vermeulen F;Boon M;Proesmans M;Lorent N;de Soir E;Vos R;Dupont L
尽管新冠肺炎被认为是高危人群，但对囊性纤维化(CF)患者的影响知之甚少。这项研究探讨了新冠肺炎对患者情绪幸福感的早期影响，以及自疫情开始以来患者在家庭治疗方面的自我报告变化。成人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，并安全地链接到他们的医疗文件。调查问卷涵盖了疫情对患者的情绪影响、慢性萎缩性胃炎和流行性感冒治疗的变化、健康保护行为和慢性萎缩性胃炎相关问题的变化，以及他们对新冠肺炎状态的看法。有效率为63%(CF80例，LTX 66例，父母73例)。范围广泛的疾病严重程度也包括在内。所有受访者都没有签约新冠肺炎，而且都严格遵守社交距离规则。这有明显的心理影响，许多人报告说，对CF和未来的压力、恐惧和担忧增加了。治疗方面的变化是积极的，包括对成年人进行更多的物理治疗，以及更高质量的雾化治疗。报告了常规的变化，如不同的治疗时机。自从大流行开始以来，成年患者和父母更频繁地取消了他们的CF预约。新冠肺炎最初的心理影响是显而易见的。这对家庭治疗的影响小得令人放心。对于遭受长期心理影响的患者，需要进行心理护理，CF团队需要将患者和父母从媒体获得的信息联系起来，并支持他们平衡感知风险和真实风险。
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. 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. 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. 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.
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