Lena Räty

Self-esteem and sense of coherence in young people with uncomplicated epilepsy: A 5-year follow-up

OBJECTIVE It is not clear how the psychosocial well-being of young people with epilepsy is affected by growing up with the condition. We studied self-esteem and sense of coherence in a group of young adults with epilepsy and compared the results with those obtained 5 years earlier. METHODS The participants (n = 97) answered questionnaires regarding self-esteem, sense of coherence, and medical characteristics. RESULTS Self-esteem and sense of coherence both decreased during the 5-year study period. Self-esteem was correlated to epilepsy-related variables. Participants who were seizure free scored higher on sense of coherence, but there was no association between seizure frequency and sense of coherence among participants who still experienced seizures. CONCLUSION We found that there was a decline in both sense of coherence and self-esteem over time for young adults with epilepsy. Growing up with epilepsy can lead to impairment of sense of coherence. Sense of coherence does not significantly correlate with epilepsy-related factors, but mirrors the phenomenon of epilepsy. Self-esteem is associated with such epilepsy-related factors as seizure frequency.

Quality of life in newly-debuted epilepsy. An empirical study

Objectives ‐ This study aimed to illuminate adults 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.

Quality of life in young adults with uncomplicated epilepsy.

This aim of this study was to illuminate quality of life (QOL) of young adults with epilepsy. Subjects (n=102) answered the Quality of Life Index (QLI) questionnaire together with an overall open question (n=95/102) regarding the impact of epilepsy on daily life. The highest QOL was reported in relation to the family domain, and the lowest, in relation to the psychological/spiritual domain. Overall the participants were satisfied with their lives. Most important were the well-being of their families, their relationships with their spouses, and their ability to control their lives. Half of the participants experienced a negative effect of epilepsy on their daily lives. Of those, 70% considered the effect insignificant or small. This study supports the conclusions that uncomplicated epilepsy does not significantly affect QOL in young adulthood and that the risk of social isolation due to uncomplicated epilepsy is not significantly increased.

Medical outcome in epilepsy patients of young adulthood : A 5-year follow-up study

UNLABELLED The appearance of new anti-epileptic drugs (AED) during the last decade has provided neurologists and their patients with a greater choice, but the proof for their superiority over traditional AEDs is sparse, especially their use in adolescence and young adulthood. We studied a group of young adults (18-27 years) with epilepsy and compared their situation in 2004 with those 5 years earlier. MATERIALS AND METHODS The participants (n=97) answered questionnaires regarding seizure-frequency, AED, side-effects and quality-of-life. Information was also taken from medical records. RESULTS The use of new generation AEDs increased during the 5-year study period, particularly among women. However seizure frequency had not changed significantly over time, and compared to men the effectiveness in controlling seizures was lower in women. The participants reported normal quality-of-life (QOL), which may indicate that the increase in number of AEDs to choose from actually improved the situation for these young adults with epilepsy. Frequency of seizures and cognitive side-effects of AEDs were associated with a lower QOL. CONCLUSIONS More women than men seem to be treated with new AEDs, and that the increase in use of new AEDs does not reduce seizure frequency in young adulthood. The effectiveness in controlling seizures seems to be lower in women in the age group studied. Further studies are required to better understand how epilepsy related factors interact.