"This is real", "this is hard" and "I'm not making it up": Experience of diagnosis and living with non-epileptic attack disorder.

PURPOSE: To use a qualitative research approach to explore adults' experience of living with non-epileptic attack disorder. OBJECTIVE: The objective was to explore the experience of adults (18 years+) with a confirmed diagnosis of non-epileptic attack disorder (NEAD) across the trajectory of the disorder. The topics investigated included the onset of symptoms, the experience of non-epileptic attacks, the diagnostic process and living with NEAD. METHOD: Twelve people diagnosed with NEAD who attended a tertiary hospital neurology department took part in semi-structured interviews. The data generated were analysed using reflexive thematic analysis. RESULTS: Eleven women and one man with median age of 25 years took part. Three themes were developed: mind-body (dis)connect, a stigmatised diagnosis and a role for containment. Adults spoke about their experience of nonepileptic attacks, the diagnostic and management process and the impact of both nonepileptic attacks and the NEAD diagnosis on their lives. CONCLUSIONS: Adults' experience's within the healthcare system across the trajectory of NEAD influenced their own understanding and trust in their NEAD experience, how they shared this with others in their social and work lives and how they managed their NEAD symptoms on a daily basis. The research suggests the need for a consistent, timely implementation of a rule-in diagnostic approach and multi-disciplinary management of NEAD. It is recommended that lessons be taken from theoretical models including the common-sense model and a modified version of the reattribution model to support the de-stigmatisation of this diagnosis to inform psychoeducation and professionally facilitated peer-support groups.

Attitudes and perceptions of Irish health care professionals regarding functional neurological disorder: A national survey.

BACKGROUND: Functional neurological disorder (FND) is a common and often disabling condition. Limited access to services for FND poses challenges both for patients and their health care providers. This survey explored the attitudes, experiences, support needs and training needs of health care professionals (HCPs) who provide care to individuals with FND in Ireland. METHODS: A broad range of HCPs working with patients with FND in Ireland partook in an anonymous online 12-item survey. Participants were recruited via professional bodies and snowball convenience sampling utilising social media and email invitation. Descriptive and inferential statistics were employed to analyze data. RESULTS: A total of 314 HCPs working in Ireland completed the survey. 80% were female and over half worked in their current role for more than 10 years.   75% of the sample encountered three or less individuals with FND per month. Identified service-related challenges to effective patient care included insufficient clinic time, lack of confidence explaining the diagnosis, and the need for greater access to specialist support.  Data revealed persisting negative attitudes toward FND patients among a proportion of respondents. The majority of respondents did not feel they received adequate education on FND, with the exception of neurologists, of whom 65% felt adequately trained.  The majority of respondents (85%) also felt that people with FND did not have access to appropriate FND services in Ireland. CONCLUSION: This study indicates that there is a significant need to improve FND education among HCPs in Ireland, in addition to developing appropriately resourced, integrated, multidisciplinary care pathways for the FND patient group.

Clinical experience with adjunctive perampanel in adult patients with uncontrolled epilepsy: A UK and Ireland multicentre study.

PURPOSE: To derive clinically useful information about the efficacy and tolerability of adjunctive treatment with perampanel for refractory epilepsy in an outpatient setting. METHOD: We pooled retrospective casenotes data of adult patients with refractory epilepsy prescribed perampanel from 18 hospitals throughout UK and Ireland. RESULTS: Three hundred and ten patients were included (mean age 40.9 [SD=12.0], 50% women, 27.7% with learning disability). The mean duration of epilepsy was 26.7 years (range 2-67 years, SD=13.5) and 91.9% were taking two or more anti-epileptic drugs at the time of perampanel initiation. Mean retention was 6.9 months (range 1 day-22.3 months, SD=4.5). The retention was 86% at 3 months, 71% at 6 months, 47.6% at 12 months and 27% at 18 months. At final follow-up a >50% reduction in seizure frequency was reached in 57.5% of tonic-clonic seizures, 57.4% of complex partial seizures and 43.8% of simple partial seizures. Eleven patients (3.5%) became seizure free. Two hundred and nine patients (67.4%) experienced adverse effects and of these 67% withdrew treatment due to their effects. The most common were sedation, behaviour/mood disturbance, dizziness, and unsteadiness. CONCLUSION: Perampanel appears a safe and effective antiepileptic drug when used as adjunctive therapy in patients with uncontrolled partial epilepsy (including those with learning disability), although few patients achieved complete seizure control. Long-term retention was slightly lower than reported rates for other anti-epileptic drugs, potentially due to the highly refractory population. Monitoring for adverse effects on energy levels, mood and behaviour is recommended.