Experiences, expectations, and fears of adolescents with epilepsy or bronchial asthma
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).
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.
KeywordsEpilepsy Bronchial asthma Adolescence Chronic disease Experiences Expectations
International Statistical Classification Of Diseases And Related Health Problems, 10th revision, German Modification
Statistical Package for the Social Science
We thank all participating patients for taking the time to take part in the interview. Additionally, we thank Eva Katharina Michlits for language editing of the manuscript.
Susanne M. Fisch designed the study protocol; developed the questionnaire; performed the questionnaire survey, the statistical analysis, and the interpretation of the data; and prepared the manuscript.
Martina P. Neininger was involved in the development of the questionnaire, performed the statistical analysis and the interpretation of the data, and critically reviewed and revised the manuscript.
Freerk Prenzel supported the development of the questionnaire and the recruitment of patients, and proof read the manuscript.
Matthias K. Bernhard supported the development of the questionnaire and the recruitment of patients, and proof read the manuscript.
Frauke Hornemann supported the development of the questionnaire and the recruitment of patients, and proof read the manuscript.
Andreas Merkenschlager supported the development of the questionnaire and the recruitment of patients, and proof read the manuscript.
Wieland Kiess supported the development of the questionnaire and proof read the manuscript.
Thilo Bertsche was involved in the development of the study protocol and the questionnaire, was involved the interpretation of data, and proof read the manuscript.
Astrid Bertsche designed the study protocol, was involved in the development of the questionnaire, supervised the questionnaire survey, the recruitment of patients and the statistical analysis, performed the interpretation of data, and critically reviewed and revised the manuscript.
Compliance with ethical standards
Conflict of interest
The authors declare that they have no conflict of interest.
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. The study described has been carried out in accordance with the abovementioned standards and has been approved by the institutional ethic committee.
Informed consent was obtained from all individual participants included in the study.
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