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Quality of life in newly-debuted epilepsy: an empirical study
Department of Health and Caring Sciences. Karlstads University, Karlstad.
Linköping University, Department of Medicine and Care, Nursing Science. Linköping University, Faculty of Health Sciences.
Linköping University, Department of Neuroscience and Locomotion, Neurology. Linköping University, Faculty of Health Sciences.
1999 (English)In: Acta Neurologica Scandinavica, ISSN 0001-6314, E-ISSN 1600-0404, Vol. 100, no 4, 221-226 p.Article in journal (Refereed) Published
Abstract [en]

Objectives - This study aimed to illuminate adult's experienced quality of life in newly-debuted epilepsy and to test the American instrument Quality of Life Index (QLI) for the first time on an epilepsy population. A second aim was to find appropriate questions to measure patient perceptions in epilepsy.

Material and methods - All persons 18–65 fulfilling criteria (n=41) and diagnosed during a 15-month period at 2 Swedish hospitals, answered questionnaires (n= 37/41) on quality of life and perceptions of epilepsy.

Results - Patients experienced the highest quality in the “Family” domain and the lowest in the “Psychological/ spiritual”. Significant correlations were found between quality of life and experienced change of life situation, own perceptions of epilepsy, seizure frequency after diagnosis, gender and side effects from antiepileptic drugs. The QLI was well applicable on people with epilepsy.

Conclusions - Data indicates that debut of epilepsy has an evident impact on quality of life and a more extensive study is required.

Place, publisher, year, edition, pages
1999. Vol. 100, no 4, 221-226 p.
National Category
Medical and Health Sciences
URN: urn:nbn:se:liu:diva-26923DOI: 10.1111/j.1600-0404.1999.tb00384.xLocal ID: 11547OAI: diva2:247473
Available from: 2009-10-08 Created: 2009-10-08 Last updated: 2012-09-20Bibliographically 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.
Linköping University Medical Dissertations, ISSN 0345-0082 ; 764
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
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)
Available from: 2009-10-08 Created: 2009-10-08 Last updated: 2012-09-20Bibliographically approved

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Räty, LenaHamrin, ElisabethSöderfeldt, Birgitta
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