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Living with epilepsy: young people with uncomplicated epilepsy and adults with newly debuted epilepsy
Linköping University, Department of Neuroscience and Locomotion, Neurology. Linköping University, Faculty of Health Sciences.
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 [en]
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: urn:nbn:se:liu:diva-28073Local ID: 12837ISBN: 91-7373-521-3 (print)OAI: oai:DiVA.org:liu-28073DiVA: diva2:248624
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
List of papers
1. Quality of life in newly-debuted epilepsy: an empirical study
Open this publication in new window or tab >>Quality of life in newly-debuted epilepsy: an empirical study
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.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-26923 (URN)10.1111/j.1600-0404.1999.tb00384.x (DOI)11547 (Local ID)11547 (Archive number)11547 (OAI)
Available from: 2009-10-08 Created: 2009-10-08 Last updated: 2017-12-13Bibliographically approved
2. Health-related quality of life in youth: a comparison between adolescents and young adults with uncomplicated epilepsy and healthy controls
Open this publication in new window or tab >>Health-related quality of life in youth: a comparison between adolescents and young adults with uncomplicated epilepsy and healthy controls
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.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-27930 (URN)10.1016/S1054-139X(03)00101-0 (DOI)12691 (Local ID)12691 (Archive number)12691 (OAI)
Available from: 2009-10-08 Created: 2009-10-08 Last updated: 2017-12-13Bibliographically approved
3. Seizures and therapy in adolescents with uncomplicated epilepsy
Open this publication in new window or tab >>Seizures and therapy in adolescents with uncomplicated epilepsy
2003 (English)In: Seizure, ISSN 1059-1311, E-ISSN 1532-2688, Vol. 12, no 4, 229-236 p.Article in journal (Refereed) Published
Abstract [en]

Purpose: This study aimed to describe seizures and their therapy among Swedish adolescents, aged 13–22, with active but uncomplicated epilepsy.

Method: The adolescents answered questionnaires (158/193). Data were also obtained from medical records.

Results: Epileptic seizure types could be specified in 92.1% of the cases. Predominant types were Primary Generalised Tonic–Clonic Seizures and Partial Complex Seizures with Secondary Generalisation. Clinical diagnoses by physicians were unspecified in 25.8%. Ninety percent were on antiepileptic drugs (AEDs), most commonly valproate and carbamazepine. New AEDs were used in 9.3% of the cases and polytherapy in 13.9%. More than 40% of the respondents had seizures despite AED treatment. Side effects of AEDs were experienced by 61%, most commonly tiredness, concentration difficulties and headache. Patients on polytherapy experienced significantly more side effects. The choice of a new AED over a traditional one was not related to seizure type or seizure control.

Conclusions: Many adolescents had persistent seizures despite treatment at a specialist regional epilepsy centre. This, plus the high reported rate of side effects of AED treatment, suggests that treatment is not optimal for the group studied. As traditional AEDs strongly dominated treatment possibly newly marketed AEDs are underused in this group.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-27929 (URN)10.1016/S1059-1311(02)00227-3 (DOI)12690 (Local ID)12690 (Archive number)12690 (OAI)
Available from: 2009-10-08 Created: 2009-10-08 Last updated: 2017-12-13Bibliographically approved
4. The relationship between illness severity, sociodemographic factors, general self-concept, and illness-specific attitude in Swedish adolescents with epilepsy
Open this publication in new window or tab >>The relationship between illness severity, sociodemographic factors, general self-concept, and illness-specific attitude in Swedish adolescents with epilepsy
2004 (English)In: Seizure, ISSN 1059-1311, E-ISSN 1532-2688, Vol. 13, no 6, 375-382 p.Article in journal (Refereed) Published
Abstract [en]

Purpose: The aim of this study was to describe the relationship between the epilepsy condition (illness severity), sociodemographic factors, general self-concept, and illness-specific attitude in adolescents with uncomplicated epilepsy.

Methods: Adolescents, aged 13–22, fulfilling criteria registered in four Swedish hospitals, answered questionnaires (n=149). The instruments “I think I am” and “Sense of coherence” measured the patients’ general self-concept. The “Child Attitude Toward Illness Scale” measured illness-specific attitude. A summary score (index) calculated from seizure frequency, seizure type, and antiepileptic drug (AED) with side effects measured “Illness Severity”.

Results: Illness severity was significantly related to the participants’ general self-concept, as well as to their attitude toward their condition; i.e. higher illness severity scores were correlated with lower sense of coherence (SOC), poorer self-esteem, and a more negative attitude towards the epilepsy condition. Females had more severe illness according to the Illness Severity Index, with almost 80% found in the moderate and high severity groups as compared to 63% of males in the moderate/high severity groups.

Conclusions: It was concluded that the severity of the epilepsy condition was related to the adolescents’ general self-concept and illness-specific attitude, but further research is needed to understand the causality of the relationship. The brief assessment of illness severity, constructed and used in this study should be addressed and developed further.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-24145 (URN)10.1016/j.seizure.2003.09.011 (DOI)3728 (Local ID)3728 (Archive number)3728 (OAI)
Available from: 2009-10-07 Created: 2009-10-07 Last updated: 2017-12-13Bibliographically approved

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