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Health-related quality of life in youth: a comparison between adolescents and young adults with uncomplicated epilepsy and healthy controls
Linköping University, Department of Neuroscience and Locomotion, Neurology. Linköping University, Faculty of Health Sciences.
Division for Health and Caring Sciences, Department of Nursing Science, Karlstad University, Karlstad, Sweden.
Linköping University, Department of Neuroscience and Locomotion, Neurology. Linköping University, Faculty of Health Sciences.
2003 (English)In: Journal of Adolescent Health, ISSN 1054-139X, E-ISSN 1879-1972, Vol. 33, no 4, 252-258 p.Article in journal (Refereed) Published
Abstract [en]

Purpose

To describe health-related quality of life (HRQOL) in adolescents and young adults with uncomplicated epilepsy and to compare it with a random sample of the general population.

Methods

Young people, aged 13–22 years, meeting the criteria and registered in four Swedish hospitals answered questionnaires (n = 158/193) on HRQOL together with 282 (n = 282/390) random controls living in the same areas in Sweden. The instruments used were “I think I am,” “Youth Self Report,” “Sense of coherence,” and “Family APGAR.” Data were analyzed by using factorial analysis of variance.

Results

Girls had a poorer HRQOL than boys. The epilepsy group reported lower competence (i.e., they were less active, had lower social competence and poorer school achievement). Both groups had an overall positive self-esteem. Differences between girls in the epilepsy and control groups were small, whereas differences among boys were more evident. Older age was related to poorer HRQOL in both groups.

Conclusions

This study points out the importance of being observant of signs of stigmatization in adolescents with epilepsy.

Place, publisher, year, edition, pages
2003. Vol. 33, no 4, 252-258 p.
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-27930DOI: 10.1016/S1054-139X(03)00101-0Local ID: 12691OAI: oai:DiVA.org:liu-27930DiVA: diva2:248482
Available from: 2009-10-08 Created: 2009-10-08 Last updated: 2017-12-13Bibliographically approved
In thesis
1. Living with epilepsy: young people with uncomplicated epilepsy and adults with newly debuted epilepsy
Open this publication in new window or tab >>Living with epilepsy: young people with uncomplicated epilepsy and adults with newly debuted epilepsy
2002 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The aim of this thesis was to illuminate experiences of living with uncomplicated epilepsy, i.e. epilepsy without any associated neurological impainnents. The focus was on young people, aged 13- 22 (II, III, IV), and adults, aged 18-65 (I), with newly debuted epilepsy, i.e. an epilepsy diagnosis registered within the last 15 months.

Thirty-seven adult patients reported their experienced quality of life (QOL) with newly debuted epilepsy by the "Quality of Life Index" (QLT) questionnaire. The lowest QOL was reported in relation to the psychological/spiritual domain and the highest to the family domain. Women reported having a lower QOL than men. Most of the participants (70%) experienced a negative change of their life situation with the debut of epilepsy and all of them reported feelings of restricted personal freedom. Negative perceptions of epilepsy, high seizure frequency and side effects of antiepileptic drugs (AED) were related to a low QOL.

Psychological and social aspects of HRQOL were compared between young people with epilepsy (n = 151) and a random sample of controls (n = 282) by the questionnaires "I think i am" (ITIA), "Youth Self Report" (YSR), "Sense of Coherence" (SOC) and "Family APGAR". Both groups had a positive self-esteem, but the epilepsy group reported having lower competence socially, and also in relation to activity and school. Older adolescents and post adolescents scored less favourably than younger adolescents, and females scored in general less favourably than males. Males with epilepsy did however faring worse compared to controls of their own sex.

The medlcal situation (seizures and therapy) of young people (n = 151) with epilepsy was described. Data were collected by self-reporting using the questionnaire "National Hospital Seizure Severity Scale" (NHS3) and by obtaining information from medical records. The dominant seizure types were primary generalized tonic-clonic seizures and complex partial seizures, 7.9% could not be specified. Ninety percent were on AED treatment, 42% with continuing seizures. More than half of the patients experienced some side effects from AED therapy.

Finally the relationship between the epilepsy condition (illness severity), sociodemographic factors, general self-concept and own attitude towards the epilepsy was studied in young people (n = 149). Data were collected by questionnaires (ITIA, SOC and the "'Child Attitude Toward lllness Scale"), and using the "lllness Severity Index" (ISI) designed for this study on the basis of seizure type, seizure frequency and AED including side effects. The patients' illness severity was related both to their self-concept and their attitudes towards the epilepsy. According to the lSI females suffered from more severe epilepsy.

ln conclusion, uncomplicated epilepsy in adults, within the first 15 months from the diagnosis was confirmed, was associated with negative experiences in psychological and social areas, i.e. areas with increased problems in the epilepsy population. Many young people with uncomplicated epilepsy continue to have seizures and high rates of side effects despite treatment at epilepsy centres. Compared to controls young people with epilepsy experienced a lower competence socially, and in relation to activity and schooL Older youth and females scored less favourably in psychological and social areas. 1t was suggested that young males with epilepsy could be more affected by an uncomplicated epilepsy condition than young females. Finally, the severity of the epilepsy condition was related to self-concept and the attitude of young people with uncomplicated epilepsy towards illness.

Place, publisher, year, edition, pages
Linköping: Linköpings universitet, 2002. 55 p.
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 764
Keyword
adolescence, antiepileptic drug, attitude, epilepsy, health, self-concept, self-esteem, seizure type, seizure control, sense of coherence, quality of life
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-28073 (URN)12837 (Local ID)91-7373-521-3 (ISBN)12837 (Archive number)12837 (OAI)
Public defence
2002-01-11, Berzeliussalen, Hälsouniversitetet, Linköping, 09:00 (Swedish)
Opponent
Available from: 2009-10-08 Created: 2009-10-08 Last updated: 2012-09-20Bibliographically approved

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Räty, LenaSöderfeldt, Birgitta

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