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首页> 外文期刊>BMJ Open Respiratory Research >How can we relieve gastrointestinal symptoms in people with cystic fibrosis? An international qualitative survey
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How can we relieve gastrointestinal symptoms in people with cystic fibrosis? An international qualitative survey

机译：我们如何在囊性纤维化中缓解胃肠道症状？国际定性调查

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Introduction Relieving gastrointestinal (GI) symptoms was identified as a ‘top ten’ priority by our James Lind Alliance Priority Setting Partnership in cystic fibrosis (CF). We conducted an online survey to find out more about the effect of GI symptoms in CF.Methods We co-produced an online survey distributed to the CF community via web-based platforms. The survey consisted of open and closed questions designed to help us learn more about the effects of GI symptoms for people with CF (pwCF). We analysed the data using descriptive statistics and thematic analysis. We promoted the survey via social media and web-based platforms which allowed respondents from any country to take part. Our participants came from the CF community, including: adults and children with CF, parents and close family of pwCF and healthcare professionals (HCPs) working with pwCF.Results There were 276 respondents: 90 (33%) pwCF, 79 (29%) family, 107 (39%) HCPs. The most commonly reported symptoms by lay respondents were stomach cramps/pain, bloating and a ‘combination of symptoms’. The top three symptoms that HCPs said were reported to them were reduced appetite, bloating and constipation. Almost all (94% (85/90)) HCPs thought medications helped to relieve GI symptoms but only 58% (82/141) of lay respondents agreed.Conclusions Our survey has shown that GI symptoms among our participants are prevalent and intrude on daily lives of pwCF. There is a need for well-designed clinical studies to provide better evidence for management of GI symptoms and complications.
机译：引言缓解胃肠道（GI）症状被确定为我们詹姆斯Lind联盟优先设定伴随囊性纤维化（CF）的“十大”优先权。我们进行了在线调查，了解有关GI症状在CF.Methods的影响。我们通过基于Web的平台共同制作了分发给CF社区的在线调查。该调查包括开放和封闭的问题，旨在帮助我们了解有关CF（PWCF）的胃肠症状的更多信息。我们使用描述性统计和主题分析分析了数据。我们通过社交媒体和基于网络的平台促进了调查，允许任何国家的受访者参加。我们的参与者来自CF社区，包括：成年人和儿童，父母和医疗保健专业人员（HCP）的父母和亲密的家庭与PWCF合作。一些受访者：90（33％）PWCF，79（29％）家庭，107（39％）HCP。 Lay受访者最常见的症状是胃痉挛/疼痛，腹胀和症状的结合'。 HCPS所说的前三名症状被报告给他们，减少了食欲，膨胀和便秘。几乎所有（94％（85/90））HCPS思想药物有助于缓解GI症状，但只有58％（82/141）的Lay受访者商定。结论我们的调查表明，我们的参与者中的GI症状是普遍存在的，每天都普遍存在PWCF的生活。需要精心设计的临床研究，为胃肠症状和并发症提供更好的证据。

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