Naslov
Quality of life in children with epilepsy

Autori
Mučić-Pucić, Branka ; Cvitanović-Šojat, Ljerka ; Dürrigl, Vera ; Šepić Grahovac, Dubravka ; Sabol, Lj ; Sabol, Z.

Vrsta, podvrsta i kategorija rada
Sažeci sa skupova, sažetak, znanstveni

Izvornik
Abstracts. Neurologia Croatica Vol. 51, Suppl. 2 / - Zagreb : Hrvatsko neurološko društvo, 2002, 21-22

Skup
5th Croatian Symposium on Epilepsy

Mjesto i datum
Osijek, Hrvatska, 12.06.2002. - 15.06.2002

Vrsta sudjelovanja
Predavanje

Vrsta recenzije
Domaća recenzija

Ključne riječi
Epilepsy; Children; Quality of life

Sažetak
Patient quality of life (QOL) is to a lesser or greater extent influenced by all chronic diseases. The impact of chronic disease on patient QOL (carcinoma, coronary disease, diabetes mellitus, asthma, etc.) has been monitored for a long time now, and for not more than some 10 years in case of epilepsy. Epilepsy is a chronic condition characterized by clinical uncertainty and the fact that it is still a socially disease. An individual with epilepsy is faced with uncertainty, primarily concerning the diagnosis, then when and whether the seizures will recur, and of what type and severity, how to best control them, and whether remission will ultimately occur. QOL is personal experience of each individual, and so is epilepsy. It is the individual’ s intimate experience of how his disease and its management influence his life. The perception of one’ s own QOL reflects discrepancies between the real and expected level of physical and mental health, independence, and social success. Hence numerous incentives for the development of questionnaires for the evaluation of QOL in epileptic patients. The questionnaire for epileptic children, QOLIE-AD-48, has been derived from the experience collected with the questionnaires for adults. Our study included 95 children/adolescents aged 8-21 years. The QOLIE-AD-48 questionnaire was used. This questionnaire covers the following issues: health attitudes, school success, social support, feeling of stigmatisation, physical health, attitude towards one’ s own disease, memory, and impact of epilepsy. The aim of the study was to assess the QOL in our patients and to compare the results thus obtained with those reported in the international literature. Data were processed according to recommendations. The use of QOLIE-AD-48 questionnaire allowed for comparison with data obtained all over the world. Analysis of the data obtained yielded total QOL score, which did not differ substantially from the results reported elsewhere. In Croatia, children with well-controlled epilepsy do not feel handicapped for their disease in most of the aspects relevant for good QOL. The only aspect that was significantly lower was the attitude towards own disease. We concluded that the children with epilepsy in Croatia feel or actually are les stigmatised, exposed to lower level of social isolation and can better cope with their disease, thus their QOL is better, as also ranked by the patients themselves, irrespective of their physical finding. These children need support at home, at school and in health institutions. Health professionals should be aware of the role of psychosocial functioning in the QOL of their patients. This primarily holds for the patient – physician relationship. Quite frequently, the issues of paramount importance for the physicians (e.g., type of epilepsy, EEG finding, dose of antiepileptics) are of little or no relevance for their patients. This means that each patient requires individualized approach as a person who must be offered an opportunity to fit in the society and his close environment. To achieve this, an instrument is needed to measure it, such as the QOL questionnaires. They are inexpensive and take little time, but the gain is invaluable. In other word, this is a are example of inexpensive quality.

Izvorni jezik
Engleski

Znanstvena područja
Kliničke medicinske znanosti, Javno zdravstvo i zdravstvena zaštita

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