Living with epilepsy : young people with uncomplicated epilepsy and adults with newly debuted epilepsy

Abstract: 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.

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