Delivery problems and switch of the manufacturer of antiseizure medications - An update of an online survey of patient's experiences in Germany and other German-speaking countries.

In the last decade there is an increasing frequency of sudden generic switches of antiseizure medications (ASMs) due to delivery problems. We here explored the patient's views toward generic substitution of ASMs and their experiences with delivery problems and switches of the manufacturer. A questionnaire already used in 2011 was updateded and published on the website of a patient's organisation from March 2022 until November 2022. 54.4 % of the responders reported delivery problems. Delivery problems were reported from Germany by a higher number of responders than from Switzerland. To 83.7 % of the responders the delivery problems were communicated by the pharmacists. In 41.9 % of these the delivery problems were coped by generic substitution. In 33 % of the latter breakthrough seizures occurred. 26 % of the respondents with experience of a change of the manufacturer not due to a delivery problem reported breakthrough seizures after being substituted. The majority of patients denied having been well informed about the possible consequences of a switch of the manufacturer. A thorough counselling on the low risks caused by change of the manufacturer and the need for good adherence to further reduce the risks should be part of the general information about their treatment with ASMs for people with epilepsy.

Knowledge of sudden unexpected death in epilepsy (SUDEP) among 372 patients attending a German tertiary epilepsy center.

BACKGROUND: There is evidence that the sudden unexpected death in epilepsy (SUDEP) risk can be reduced by good seizure control, nocturnal supervision, and by early cardiopulmonary resuscitation if cardiorespiratory arrest occurs in the aftermaths of generalized tonic-clonic seizures (GTCS). These measures, however, may critically depend on the knowledge of patients and relatives on SUDEP. Here, we assessed the basic knowledge on SUDEP of people with epilepsy at a tertiary epilepsy center in Germany. METHODS: Adult patients with epilepsy and relatives or caregivers of patients with epilepsy aged 16years or older attending our outpatient clinic from January to March 2014 were given the opportunity to participate in a (assisted or unassisted) written survey. In the anonymized questionnaire, people were asked if they had already heard about SUDEP, by what means and if they wish to learn (more) about SUDEP. Furthermore, age, sex, epilepsy duration, highest degree of education, number of GTCS during the last year, and estimation of subjective impairment by their disease were assessed. Statistics were done using mixed linear or logistic regression models. RESULTS: A total of 372 patients' questionnaires were included in this survey. More than 87% of the participants had never heard of SUDEP before. Whereas about 50% of the participants wanted to learn more about SUDEP, about 40% did not. Only the age at survey was significantly associated with both being informed and the desire of learning more about SUDEP: Younger patients had more often heard (p=0.022) and wanted to know more about SUDEP (p=0.020). Thirty-nine patients were considered at high risk for SUDEP. Of these, only 6 patients (15%) knew about SUDEP prior to this survey, but 18 patients (46%) wanted to learn more about this fatal complication. CONCLUSION: Our data suggest that the level of information on SUDEP among people with epilepsy is poor in Germany regardless of sex, school education, or epilepsy severity. Additionally, a considerable proportion of people with epilepsy seems to prefer not getting detailed information on SUDEP. More efforts are required to understand the potential barriers of the education of patients and relatives on sudden death with the ultimate goal of decreasing the risk of SUDEP.

Pregnancy-related knowledge of women with epilepsy - An internet-based survey in German-speaking countries.

There are several issues, which have to be acknowledged, when treating women with epilepsy (WWE). The need for counseling WWE in Germany with epilepsy on pregnancy-related matters was stressed in several papers and medical guidelines. Physicians treating WWE in Germany therefore should be aware of the information needs of their patients. We aimed to determine the level of pregnancy-related knowledge of WWE and their informational needs concerning pregnancy and childbirth issues in German-speaking countries by an internet-based survey. The questionnaire consisted of 18 questions addressing the characteristics of the epilepsy syndromes, the patients' experience with pregnancy, and the sources of their pregnancy-related knowledge. Another 20 items addressed the level of pregnancy-related knowledge. One hundred ninety-two women (179 patients, 13 relatives; age: 30.5±10.8years) participated. Most of the women got information and advice on the treatment of epilepsy from a neurologist (81%). Most of the women had obtained information concerning driving license (72%) followed by information about pregnancy and delivery (60%). The women, who remembered being counseled about pregnancy-related matters gave more correct answers to the pregnancy-related questions than the others (51±17% vs. 38±24%, p<0.011). Thirty-eight percent of WWE taking enzyme inducing antiepileptic drugs (AEDs) were unaware of the interaction with oral contraception. Forty-one percent of WWE taking valproate were unaware of its high teratogenicity, and 89% of WWE had not been counseled about potentially reduced bone mineral density. Forty-six percent of participants did not believe that the majority of WWE have healthy children. The findings of this survey reveal considerable information needs of WWE concerning pregnancy-related matters in German-speaking countries.

Generic substitution of antiepileptic drugs--a survey of patients' perspectives in Germany and other German-speaking countries.

In this study, we sought to determine the patients' attitudes towards generic substitution of antiepileptic drugs (AEDs) and their experiences with the usage of generic antiepileptic drugs in Germany and other German-speaking countries. A questionnaire was designed for a cross-sectional study. Two thousand copies of the questionnaire were delivered with a magazine edited by a patients' organization. Additionally, the questionnaire was placed on the internet platform of another patients' organization. Thirty-two percent of the patients who already experienced a switch to generic AEDs complained of problems with the switch. Patients who answered the magazine survey worried significantly more about generic substitution of AEDs than patients who answered the internet version. Patients who had never switched were more concerned about generic substitution than those who had already switched. Moreover, patients' beliefs differed between the use of generic drugs in acute medical conditions such as pain and infections and the use of generic AEDs in epilepsy.