Care of pregnant women with epilepsy in the United Kingdom: A national survey of healthcare professionals.

OBJECTIVES: To map the care provided to pregnant women with epilepsy in UK maternity units and identify future research priorities by conducting a nationwide survey of healthcare professionals. STUDY DESIGN: A prospective cross-sectional electronic survey was conducted between 29 April and 30 October 2021. The survey included 23 questions developed and refined with relevant stakeholders, including a woman with lived experience of epilepsy and pregnancy. We used descriptive analyses to summarise responses and estimated proportions with medians and interquartile ranges. RESULTS: 144 individual healthcare professionals from 94 hospitals, representing 77 NHS Trusts, participated in the survey. Obstetricians were the most common responders (45%, 65/144) and almost half (47%, 7/15) of regions had a survey response rate per NHS Trust greater than 50%. Six pregnant women with epilepsy, on average, were booked into antenatal care per hospital per month, and 49% (46/94) of hospitals saw women for specialist antenatal care in the first trimester. The care provided across healthcare systems varied, with multiple pathways for referral to specialist care within regions. Midwife referral was the most used care pathway (80%, 75/94). Less than a third of hospitals (31%, 29/94) ran joint obstetric/neurology clinics for pregnant women with epilepsy. Most survey respondents (81%, 117/144) were confident talking to pregnant women about their risk of seizures but only a minority (20%, 29/144) used validated calculators to assess this risk. There was broad agreement across healthcare professionals that the priorities for research should focus on how to improve communication and address pregnant women's concerns regarding epilepsy and pregnancy, and to develop further understanding on the optimal use and long-term effects of anti-seizure medication. CONCLUSION: Our UK nationwide survey of hospital-based maternity services for pregnant women with epilepsy identified wide variation in when, how and by whom these women are seen, with differences between and within the UK regions. This survey highlights areas for improvement in the care of pregnant women with epilepsy.

Enhancing patients' experiences of living with epilepsy.

Epilepsy is a multifaceted neurological condition that has many causes. Living with epilepsy can have significant physical, psychological and social effects on an individual and their family. A patient's experience of living with epilepsy can be influenced by multiple factors, such as pre-existing comorbidities or underlying risk factors for developing comorbidities. This article explores the experiences of patients with epilepsy at the point of diagnosis, in hospital and when taking anti-epileptic drugs. It also details various evidence-based interventions that can improve these patients' experiences and the quality of care that they receive.

Reducing risks for pregnant women with epilepsy: A qualitative study exploring experiences of using a toolkit at the antenatal booking appointment.

PURPOSE: Epilepsy is a high risk neurological disease associated with an increased risk of indirect maternal mortality due to sudden unexpected death in epilepsy. No evidence exists on the antenatal booking risk management process in women with epilepsy. This study therefore aimed to explore the experiences of midwives' in using a maternity epilepsy toolkit designed by the author to assist with this process. Midwives were chosen as the sample as they are predominantly the first health professional to learn of the diagnosis at the antenatal booking appointment. OBJECTIVES: The objective of this study was to explore the experiences of midwives in using a maternity epilepsy toolkit at the booking appointment. DESIGN: This is a qualitative study using the principles of hermeneutic phenomenology. SETTING: The study setting is in One National Health Service (NHS) Trust in the South of England. PARTICIPANTS: The participants of the study were n = 4 community midwives who used the maternity epilepsy toolkit at the booking appointment. METHOD: In-depth semistructured one-to-one interviews were used. MEASUREMENTS: An interview schedule using main questions, probes, and reinforcers was implemented. Audio-recorded interviews were transcribed verbatim. Transcripts were checked against audio recordings for accuracy. ANALYSIS: Inductive approach organized by phenomenological framework to identify recurrent codes, patterns, and themes were used for analysis. FINDINGS: The following three themes clearly emerged: 'foundations of epilepsy knowledge', 'using the toolkit in midwifery practice', and 'the toolkits influence on learning'. CONCLUSION: Participants described lack of epilepsy knowledge and experience prior to using the 'toolkit' and how being prepared optimized its use. They articulated how it enabled them to collate the epilepsy and treatment history, share risk management strategies, and expedite referrals appropriately. They discussed how it increased confidence, reduced fear, and inspired motivation toward learning. The results of this study will provide a foundation for future research exploring the impact that the 'toolkit' has on multidisciplinary care provision. IMPLICATIONS FOR PRACTICE: This small study demonstrated the 'toolkits' potential as a method of increasing knowledge about epilepsy and risk management. Initiation of its use in early pregnancy is intended to promote effective history taking, facilitate the identification of women at increased risk of morbidity and mortality, and encourage joint working through early multidisciplinary team referral and involvement. This paper is for the Special Issue :Prevent 21: SUDEP Summit - Time to Listen.

Valproate MHRA Guidance: Limitations and Opportunities.

Recent publication of the Medicines and Healthcare products Regulatory Agency (MHRA) in the United Kingdom has strengthened the regulatory measures for valproate medicines. It highlights the importance of making women of childbearing age with epilepsy aware of the teratogenic risks of valproate and encourages the withdrawal of it from those currently prescribed. While a significant directive, it raises concerns of not having considered the impact on special populations such as women with Intellectual Disability (ID). While it is important that women with ID are not excluded from such safety initiatives, due caution needs to be taken on a case by case basis preferably, to ensure their best interests are central to the decision making. Many women with moderate to profound ID cannot have informed consented sexual relationships not to mention cognitive incapability to make informed choices on medication suitability. These women are at potential risk of having their epilepsy control undermined due to the MHRA directives. Around 30% of people with moderate to profound ID have seizures of which 60% are considered treatment resistant. In this vulnerable population changes to medication without clear clinical and social insights could lead to increased harm levels. This paper enumerates the challenges of application of the new directive to these special populations and proposes a pathway based on individual cognitive ability to provide informed consent to facilitate the continuation or removal of valproate. It is important not to lose sight of individual circumstances and the importance of working collaboratively toward providing person center care.

The influence of reduced oxygen availability on pathogenicity and gene expression in Mycobacterium tuberculosis.

We investigated how Mycobacterium tuberculosis responded to a reduced oxygen tension in terms of its pathogenicity and gene expression by growing cells under either aerobic or low-oxygen conditions in chemostat culture. The chemostat enabled us to control and vary the oxygen tension independently of other environmental parameters, so that true cause-and-effect relationships of reduced oxygen availability could be established. Cells grown under low oxygen were more pathogenic for guinea pigs than those grown aerobically. The effect of reduced oxygen on global gene expression was determined using DNA microarray. Spearman rank correlation confirmed that microarray expression profiles were highly reproducible between repeat cultures. Using microarray analysis we have identified genes that respond to a low-oxygen environment without the influence of other parameters such as nutrient depletion. Some of these genes appear to be involved in the biosynthesis of cell wall precursors and their induction may have contributed to increased infectivity in the guinea pig. This study has shown that a combination of chemostat culture and microarray presents a biologically robust and statistically reliable experimental approach for studying the effect of relevant and specific environmental stimuli on mycobacterial virulence and gene expression.

In vitro gene expression dissected: chemostat surgery for mycobacterium tuberculosis.

A unique approach, combining defined and reproducible in vitro models with DNA microarrays, has been developed to study environmental modulation of mycobacterial gene expression. The gene expression profiles of samples of Mycobacterium tuberculosis, from independent chemostat cultures grown under defined and reproducible conditions, were found to be highly correlated. This approach is now being used to study the effect of relevant stimuli, such as limited oxygen availability, on mycobacterial gene expression. A modification of the chemostat culture system, enabling large-volume controlled batch culture, has been developed to study starvation survival. Cultures of M. tuberculosis have been maintained under nutrient-starved conditions for extended periods, with 10(6) - 10(7) bacilli surviving in a culturable state after 100 days. The design of the culture system has made it possible to control the environment and collect multiple time-course samples to study patterns of gene expression. These studies demonstrate that it is possible to perform long-term studies and obtain reproducible expression data using controlled and defined in vitro models.