比较两个东欧国家囊性纤维化患儿及其父母的健康相关生活质量。
Comparison of health-related quality of life among children with cystic fibrosis and their parents in two Eastern European countries.
机构信息
CF Unit, Institute of Mother and Child, Warsaw, Poland.
CF Unit, Heim Pal Children's Hospital, Ulloi ut 86, 1089 Budapest, Hungary; Department of Pharmacy Administration, Semmelweis University, Hogyes E. u. 7-9, 1092 Budapest, Hungary.
出版信息
J Cyst Fibros. 2015 Nov;14(6):798-804. doi: 10.1016/j.jcf.2015.03.008. Epub 2015 May 5.
BACKGROUND
In the optimal care of cystic fibrosis (CF) patients, not only medical parameters are respected but also health-related quality of life (HRQOL). The aim of our study was to compare HRQOL of CF patients from two Eastern European countries.
METHODS
141 patients with CF (6-18 years) and 102 parents completed the Cystic Fibrosis Questionnaire-Revised (CFQ-R). Data about disease severity, type of children's education and questions about parents' employment status were collected.
RESULTS
In the patient group, a significant difference was found only in Treatment burden, whereas in the parent group, there were significant differences in Treatment burden, Emotional functioning, Eating and Digestive symptoms between the two countries. School attendance was revealed as an important factor influencing HRQOL.
CONCLUSIONS
Observed differences in evaluation of HRQOL may be caused by different therapeutic and diagnostic challenges between countries. To identify possible presence of psychosocial problems, monitoring of HRQOL is recommended.
背景
在囊性纤维化（CF）患者的最佳护理中，不仅要考虑医学参数，还要考虑健康相关生活质量（HRQOL）。我们研究的目的是比较来自两个东欧国家的 CF 患者的 HRQOL。
方法
141 名 CF（6-18 岁）患者和 102 名家长完成了囊性纤维化问卷修订版（CFQ-R）。收集了有关疾病严重程度、儿童教育类型以及家长就业状况问题的数据。
结果
在患者组中，仅在治疗负担方面存在显著差异，而在家长组中，两国之间在治疗负担、情绪功能、饮食和消化症状方面存在显著差异。学校出勤率被揭示为影响 HRQOL 的重要因素。
结论
HRQOL 评估中观察到的差异可能是由于各国之间治疗和诊断挑战的不同所致。为了确定可能存在的心理社会问题，建议监测 HRQOL。
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