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Background

The concept of quality of life or health-related quality of life has been established since the early 1990s in various fields of medicine and social welfare, including epileptology. Several validated questionnaires to assess quality of life (QoL) of people with epilepsy are available and were used, for example, to evaluate the efficacy of new drugs, epilepsy surgery or other interventions. However, most of these questionnaires are not or only after modifications equally applicable to persons with intellectual disabilities (ID).

Objectives

An overview on instruments and scales for the assessment of QoL in persons with epilepsy and ID is provided. Methodological problems of the assessment of QoL in persons with ID, especially in persons with ID and epilepsy, and possible solutions are discussed.

Methods

The review is based on a search of PubMed-listed articles. In addition, reviews and some German (nonPubMed listed) publications were considered.

Results and discussion

Several validated scales for the assessment of QoL in persons with ID have been developed internationally. However, only a few of them are available in a validated, German version, e.g., the WHOQOL-BREF and the module WHOQOL-DIS for adults with ID and the DISADKIDS scales for children and adolescents with disabilities or chronic illnesses. The latter include an additional module for children with epilepsy. These scales can be used for self and proxy assessment of QoL by parents or carers.Some QoL instruments are developed especially for persons with ID and epilepsy, e.g. the GEOS scales for adults, including a self-report version (client version GEOS-C), and the ELDQOL, ICND, QOLCE for children based on proxy assessments of QoL by parents. However, none of these scales to our knowledge is available in a validated German version. A German version of the GEOS scales is currently being tested at the Epilepsy Center Bethel.According to the concept of QoL, self report should be preferred to proxy assessment. However, this is a major methodological challenge in the presence of ID. Not even the assessment of QoL using a modified or simplified QoL questionnaire (with assistance if necessary) or as a standardized interview will not be practicable in many cases, especially in severe ID. The proxy assessment of QoL by carers or relatives is only partially concordant with the self-report by the person with ID dependent on several factors like severity of disability, knowledge of the person etc.Further studies are necessary to develop QoL instruments and to investigate QoL especially in patients with epilepsy and ID.
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Cavernous angiomas (cavernous hemangiomas, cavernomas) are found in 5–20% of all cerebrovascular malformations. A wide spectrum of clinical manifestations can occur. Epileptic seizures, clinical significant cerebral bleeding and focal neurological deficits are the main symptoms. To date the optimum management remains still uncertain, treatment depends on lesional and individual factors.  相似文献   

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Rück J  Bauer J 《Der Nervenarzt》2008,79(6):691-695
BACKGROUND: The aim of this study was to evaluate the treatment of women with epilepsy investigated prior to or during pregnancy. PATIENTS: One hundred eighteen women (median age 28.9 years) with idiopathic (n=43), cryptogenic (n=41), or symptomatic (n=29) epilepsy and appearing for special pregnancy planning advice at a German epileptology clinic were evaluated. All patients were investigated between 2002 and 2007. FINDINGS: Of the study patients, 69 were seen prior to pregnancy, 41 (59.4%) were on monotherapy with antiepileptic drugs (AED), and 22 (31.9%) were already on folic acid supplementation. A change in AED medication was recommended in 50 (72.5%). Ninety-three of the patients were seen during pregnancy, most often during the first trimenon (n=44). Fifty-one (55%) were on AED monotherapy, most often with lamotrigine (n=24) or valproate (n=13). During pregnancy, seizure frequency increased in 33 women (35.5%) and decreased in 14 (15%). CONCLUSION: Monotherapy with AED should be established if possible, and folic acid supplementation should be started prior to pregnancy.  相似文献   

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Clinical Epileptology - Zur Differenzierung von schlafgebundenen Ereignissen in epileptische Anfälle oder Parasomnien sind als diagnostische Merkmale hilfreich: Familienanamnese,...  相似文献   

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