Search

OBJECTIVE: This study aimed to determine the prevalence of epilepsy in four European countries (Austria, Denmark, Ireland, and Romania) employing a standard methodology. The study was conducted under the auspices of ESBACE (European Study on the Burden and Care of Epilepsy).METHODS: All hospitals and general practitioners serving a region of at least 50 000 persons in each country were asked to identify patients living in the region who had a diagnosis of epilepsy or experienced a single unprovoked seizure. Medical records were accessed, where available, to complete a standardized case report form. Data were sought on seizure frequency, seizure type, investigations, etiology, comorbidities, and use of antiseizure medication. Cases were validated in each country, and the degree of certainty was graded as definite, probable, or suspect cases.RESULTS: From a total population of 237 757 in the four countries, 1988 (.8%) patients were identified as potential cases of epilepsy. Due to legal and ethical issues in the individual countries, medical records were available for only 1208 patients, and among these, 113 had insufficient clinical information. The remaining 1095 cases were classified as either definite (n = 706, 64.5%), probable (n = 191, 17.4%), suspect (n = 153, 14.0%), or not epilepsy (n = 45, 4.1%).SIGNIFICANCE: Although a precise prevalence estimate could not be generated from these data, the study found a high validity of epilepsy classification among evaluated cases (95.9%). More generally, this study highlights the significant challenges facing epidemiological research methodologies that are reliant on patient consent and retrospective chart review, largely due to the introduction of data protection legislation during the study period. Documentation of the epilepsy diagnosis was, in some cases, relatively low, indicating a need for improved guidelines for assessment, follow-up, and documentation. This study highlights the need to address the concerns and requirements of recruitment sites to engage in epidemiological research.

Supplemental material, SupplementalFile1 for Exploring the relationship between parent–child communication about epilepsy and psychosocial well-being by Stephanie O’Toole, Pamela Gallagher, Ailbhe Benson, Amre Shahwan, Joan K Austin and Veronica Lambert in Journal of Health Psychology

Disclosing a child’s epilepsy to others external to the nuclear family presents a salient challenge for children with epilepsy (CWE) and their parents. However, a systematic review revealed that empirical evidence regarding how such populations experience epilepsy disclosure is limited. The core contribution this study makes is the explication of CWE’s and parents’ epilepsy disclosure behaviours and experiences, and the elucidation of the relationships between CWE’s and parents’ epilepsy disclosure behaviours and demographic/clinical characteristics, psychosocial wellbeing and illness attitudes. This mixed methods study involved two phases: 1) semi-structured interviews with CWE (n=29) and their parents (n=34); and 2) a cross-sectional survey of 72 parents and 47 CWE. Findings revealed that CWE and their parents adopt varying disclosure management strategies, ranging from voluntary disclosure to concealment. CWE and their parents identified many barriers to and enablers of disclosure, including: the desire for normalcy; others’ reactions; the condition’s invisibility; media coverage of epilepsy; emotional responses to the diagnosis; the complexity of epilepsy; self, other and public perceptions of, and attitudes towards epilepsy; and seizure characteristics. Greater concealment amongst CWE and parents was significantly correlated with: 1) CWE reporting greater stigma, and poorer illness attitudes and health-related quality of life; and 2) parents responding negatively to the child’s illness, perceiving greater stigma and reporting fewer epilepsy-related interactions with CWE. This study provides a nuanced understanding of the disclosure process engaged in by CWE and parents, enhancing our knowledge of their disclosure strategies and targets, the content and situational context of their disclosure exchanges, barriers to and enablers of disclosure, and the consequences of disclosure in doing so. Overall, the findings suggest that greater concealment is associated with more negative outcomes for CWE and parents. Interventions to assist CWE and parents to navigate epilepsy disclosure could beneficially impact on their psychosocial wellbeing.