Title |
Experiences, expectations, and fears of adolescents with epilepsy or bronchial asthma
|
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Published in |
European Journal of Pediatrics, July 2018
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DOI | 10.1007/s00431-018-3200-4 |
Pubmed ID | |
Authors |
Susanne Marie Fisch, Martina Patrizia Neininger, Freerk Prenzel, Matthias Karl Bernhard, Frauke Hornemann, Andreas Merkenschlager, Wieland Kiess, Thilo Bertsche, Astrid Bertsche |
Abstract |
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. |
X Demographics
Geographical breakdown
Country | Count | As % |
---|---|---|
Netherlands | 1 | 14% |
France | 1 | 14% |
Spain | 1 | 14% |
Unknown | 4 | 57% |
Demographic breakdown
Type | Count | As % |
---|---|---|
Members of the public | 5 | 71% |
Practitioners (doctors, other healthcare professionals) | 1 | 14% |
Science communicators (journalists, bloggers, editors) | 1 | 14% |
Mendeley readers
Geographical breakdown
Country | Count | As % |
---|---|---|
Unknown | 35 | 100% |
Demographic breakdown
Readers by professional status | Count | As % |
---|---|---|
Student > Master | 6 | 17% |
Other | 2 | 6% |
Lecturer | 2 | 6% |
Student > Bachelor | 2 | 6% |
Student > Postgraduate | 2 | 6% |
Other | 7 | 20% |
Unknown | 14 | 40% |
Readers by discipline | Count | As % |
---|---|---|
Medicine and Dentistry | 10 | 29% |
Nursing and Health Professions | 4 | 11% |
Psychology | 3 | 9% |
Sports and Recreations | 1 | 3% |
Agricultural and Biological Sciences | 1 | 3% |
Other | 2 | 6% |
Unknown | 14 | 40% |