University Hospital for Children and Adolescents, Centre of Pediatric Research, Liebigstraße 20a, 04103, Leipzig, Germany.
Drug Safety Center and Dept. of Clinical Pharmacy, Leipzig University, Brüderstraße 32, 04103, Leipzig, Germany.
Eur J Pediatr. 2018 Oct;177(10):1451-1457. doi: 10.1007/s00431-018-3200-4. Epub 2018 Jul 3.
Epilepsy and bronchial asthma are frequent in adolescents. Data on adolescents' experiences with their disease and on their expectations for the future, however, is scarce. Patients of a university hospital aged 12 to 17 with epilepsy or bronchial asthma were interviewed based on a questionnaire. Forty-five patients with epilepsy and 47 with bronchial asthma were interviewed. Adolescents with epilepsy felt more impaired by their disease (median 2.5; Q25/Q75 0.75/3.0; 6-level Likert scales: 0 = not at all, 5 = very strong) than those with asthma (1.0; 0/3.0; p = 0.017). Seventy-nine patients (85.9%) had never used the Internet to gain information about their disease. Adolescents with epilepsy felt more limited in their career possibilities by their disease (2.0; 0/4.0) than those with asthma (0; 0/2.0; p = 0.001) and had a higher level of concern about passing their disease on to their children (3.0; 0/4.0) than their peers with asthma (1.5; 1.5/3.0; p = 0.016). Girls with epilepsy were more anxious (4.0; 0.5/5.0) than girls with asthma (0; 0/4.0) about complications of the disease regarding pregnancy (p = 0.019).
As well adolescents with epilepsy as with asthma described limitations of their daily life and concerns about the future. What is Known: • Epilepsy and bronchial asthma are frequent chronic diseases in adolescents. • Those diseases can affect psychosocial development. What is New: • Adolescents with epilepsy and bronchial asthma described a high burden of their disease, and most adolescents had not used the Internet to inform themselves on their disease. • Especially adolescents with epilepsy fear limitations in their job possibilities, inheritance of their disease and complications in their prospective pregnancy.
描述青少年癫痫和支气管哮喘患者的疾病体验及对未来的期望。
选择我院儿科 12~17 岁的癫痫或支气管哮喘青少年患者，采用问卷调查方式进行访谈。
共纳入癫痫患者 45 例，支气管哮喘患者 47 例。癫痫患者报告其疾病对生活的影响更为严重（中位数 2.5，四分位数间距为 0.753.0；6 级 Likert 评分：0 分=完全没有，5 分=非常严重），而哮喘患者则为 1.0（03.0；p=0.017）。79 例（85.9%）患者从未使用互联网获取疾病相关信息。癫痫患者报告其疾病对职业发展的限制更为严重（2.0，04.0），而哮喘患者则为 0（02.0；p=0.001）。癫痫患者对疾病遗传给子女的担忧程度也更高（3.0，04.0），而哮喘患者则为 1.5（1.53.0；p=0.016）。癫痫女孩比哮喘女孩更担心疾病对妊娠的影响（4.0，0.5~5.0）（p=0.019）。
青少年癫痫和支气管哮喘患者均描述了日常生活的限制和对未来的担忧。
