[从患者角度看囊性纤维化]
[Cystic fibrosis as seen from the patients' perspective].
作者信息
Wahl Astrid K, Rustøen Tone, Gjengedal Eva, Homme Jorunn, Hanestad Berit Rokne
机构信息
Avdeling for sykepleierutdanning Høgskolen i Oslo.
出版信息
Tidsskr Nor Laegeforen. 2003 Sep 25;123(18):2580-2.
BACKGROUND
We present the results of a study of adults with cystic fibrosis, with an emphasis on their experience of symptoms and treatment, future prospects, and quality of life.
MATERIAL AND METHODS
86 adults (above the age of 18) with cystic fibrosis, recruited through the Norwegian Centre for Cystic Fibrosis. The response rate was 84%; average age of respondents 29; 48% were women.
RESULTS
The most frequently reported symptoms were coughing, phlegm and fatigue. 26% experienced great difficulties living with cystic fibrosis. 75% were satisfied with their life and 71% had a positive outlook for the future. Lung function was the variable most strongly related to symptoms, treatment and outlook for the future.
INTERPRETATION
It is possible to experience life as good even though one is living with a life-threatening disease such as cystic fibrosis.
背景
我们展示了一项针对成年囊性纤维化患者的研究结果，重点关注他们的症状体验、治疗情况、未来前景和生活质量。
材料与方法
通过挪威囊性纤维化中心招募了86名成年（18岁以上）囊性纤维化患者。应答率为84%；受访者平均年龄29岁；48%为女性。
结果
最常报告的症状是咳嗽、咳痰和疲劳。26%的患者在与囊性纤维化共存时经历了极大困难。75%的患者对自己的生活感到满意，71%的患者对未来持积极态度。肺功能是与症状、治疗和未来前景关联最紧密的变量。
解读
即使患有诸如囊性纤维化这种危及生命的疾病，也有可能体验到美好的生活。
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