Allergy Action

One in 200 children - in the UK have epilepsy. Approximately, 1 in 1,000 children with epilepsy die yearly from Sudden unexpected death in epilepsy (SUDEP), a leading cause of death in epilepsy. Various risk factors contributing to epilepsy mortality particularly SUDEP, some modifiable, have been identified. Structured discussion of risks results in behavioural change that reduces individual risk factors. To investigate and collate risk factors for SUDEP and epilepsy mortality in children to propose a structured communication tool ("Checklist") for person centred communication. A Systematic review for children's epilepsy mortality risk factors was conducted. The search strategy was developed by clinical and topic experts in conjunction with a clinical evidence specialist and an epilepsy charity. Database searches (MEDLINE, Embase, CINAHL, PsycINFO) were performed in 06/2022 and updated 02/2024, with results assessed independently by two reviewers. Terms covered paediatrics, epilepsy, epilepsy mortality and SUDEP. Results were synthesised into risk factor domain. Six papers encompassing three review articles (covering 33 original research articles), and three other original research articles were included. A further four articles specifically looking at different genetic epilepsies and SUDEP were also added. There was heterogeneity among papers. No RCTs, including papers in the review, were identified. Quality analysis of papers was not undertaken. Eleven key risk factors covering domains of seizure presentation, management, co-morbidity and genetics were identified. A safety Checklist is proposed with identified risk factors for routine clinical-patient interaction to facilitate easier, structured, individualised and evidence-based communication.

Sudden unexpected death in epilepsy (SUDEP) is a leading cause of epilepsy mortality. All international guidance strongly advocates for clinicians working with people with epilepsy (PWE) to discuss SUDEP. Clinician views working with PWE in the UK and Norway on SUDEP counselling are compared. A cross-sectional online mixed methodology survey of 17 Likert and free-text response questions using validated themes was circulated via International League against Epilepsy/Epilepsy Specialist Nurses Association in the UK and International League against Epilepsy/Epilepsinet in Norway using a non-discriminatory exponential snowballing technique leading to non-probability sampling. Quantitative data were analysed using descriptive statistics and Mann-Whitney, Kruskal-Wallis, chi-squared and Fisher's exact tests. Significance was accepted at p < 0.05. Thematic analysis was conducted on free-text responses. Of 309 (UK 197, Norway 112) responses, UK clinicians were more likely to have experienced an SUDEP (p < 0.001), put greater importance on SUDEP communication (p < 0.001), discuss SUDEP with all PWE particularly new patients (p < 0.001), have access and refer to bereavement support (p < 0.001) and were less likely to never discuss SUDEP (p < 0.001). Significant differences existed between both countries' neurologists and nurses in SUDEP counselling with UK clinicians generally being more supportive. UK responders were more likely to be able to identify bereavement support (p < 0.001). Thematic analysis highlighted four shared themes and two specific to Norwegians. Despite all international guidelines stating the need/importance to discuss SUDEP with all PWE there remain hesitation, avoidance and subjectivity in clinicians having SUDEP-related conversations, more so in Norway than the UK. Training and education are required to improve communication, engagement and decision making.

A quarter of people with Intellectual Disability (ID) in the UK have epilepsy compared to 0.6% in the general population and die much younger. Epilepsy is associated with two-fifths of all deaths with related polypharmacy and multi-morbidity. Epilepsy research on this population has been poor. This study describes real-world clinical and risk characteristics of a large cohort across England and Wales. A retrospective multi-centre cohort study was conducted. Information on seizure characteristics, ID severity, relevant co-morbidities, psychotropic and antiseizure drugs (ASDs), SUDEP and other risk factors was collected across a year. Of 904 adults across 10 centres (male:female, 1.5:1), 320 (35%) had mild ID and 584 (65%) moderate-profound (M/P) ID. The mean age was 39.9years (SD 15.0). Seizures were more frequent in M/P ID (p < 0.001). Over 50% had physical health co-morbidities, more in mild ID (p < 0.01). A third had psychiatric co-morbidity and a fifth had an underlying genetic disorder. Autism Spectrum Disorder was seen in over a third (37%). Participants were on median two ASDs and overall, five medications. Over quarter were on anti-psychotics. Over 90% had an epilepsy review in the past year but 25% did not have an epilepsy care plan, particularly those with mild ID (p < 0.001). Only 61% had a documented discussion of SUDEP, again less likely with mild ID or their care stakeholders (p < 0.001). Significant levels of multi-morbidity, polypharmacy and a lack of systemised approach to treatment and risk exist. Addressing these concerns is essential to reduce premature mortality.

IntroductionFood hypersensitivity (FHS), including food allergy, coeliac disease and food intolerance, is a major public health issue. The Food Standards Agency (FSA), an independent UK Government department working to protect public health and consumers’ wider interests in food, sought to identify research priorities in the area of FHS.MethodsA priority setting exercise was undertaken, using a methodology adapted from the James Lind Alliance—the first such exercise with respect to food hypersensitivity. A UK‐wide public consultation was held to identify unanswered research questions. After excluding diagnostics, desensitization treatment and other questions which were out of scope for FSA or where FSA was already commissioning research, 15 indicative questions were identified and prioritized by a range of stakeholders, representing food businesses, patient groups, health care and academia, local authorities and the FSA.Results295 responses were received during the public consultation, which were categorized into 70 sub‐questions and used to define 15 key evidence uncertainties (‘indicative questions’) for prioritization. Using the JLA prioritization framework, this resulted in 10 priority uncertainties in evidence, from which 16 research questions were developed. These could be summarized under the following 5 themes: communication of allergens both within the food supply chain and then to the end consumer (ensuring trust in allergen communication); the impact of socio‐economic factors on consumers with FHS; drivers of severe reactions; mechanism(s) underlying loss of tolerance in FHS; and the risks posed by novel allergens/processing.DiscussionIn this first research prioritization exercise for food allergy and FHS, key priorities identified to protect the food‐allergic public were strategies to help allergic consumers to make confident food choices, prevention of FHS and increasing understanding of socio‐economic impacts. Diagnosis and treatment of FHS was not considered in this prioritization.

Adolescence represents a vulnerable time for individuals with asthma and allergic conditions. They suffer an unexpected degree of morbidity. This systematic review aimed to understand the challenges faced by adolescents and young adults with these conditions. A systematic literature search was undertaken across eight databases. References were checked by two reviewers for inclusion. Study data were extracted, and their quality was assessed in duplicate. A narrative meta-synthesis was undertaken. A total of 108 papers describing 106 studies were retrieved, most focused on asthma. Five themes were identified across studies: (a) Health-related quality of life-impairment was associated with poor disease control, psychosocial issues, adolescent-onset allergic disease and female sex; (b) Psychological factors-asthma and food allergy were associated with anxiety and depression, atopic dermatitis was associated with suicidal ideation, and that parental emotional support may be protective; (c) Adherence-suboptimal adherence was associated with older age, barriers to medication usage, poor symptom perception and failure to take responsibility, and positive factors were routines, simpler treatment regimes, better knowledge and perceptions about medications; (d) Self-management-facilitated by education, knowledge and a positive attitude; and (e) Supportive relationships-families could modify barriers to adherence and foster positive views about self-management, adolescents suggested that their peers should be more involved in supporting them, and adolescents also wished to have support from nonjudgemental healthcare professionals. We have some understanding of the challenges faced by adolescents with asthma, less so for other allergic conditions. This knowledge will be used to support guidelines for managing adolescents.

BackgroundFor parents and caregivers of food hypersensitive (FH) children, accommodating their child’s dietary needs when eating out can be a challenging experience. This study explored caregivers’ experiences and behaviours when eating out with their FH child in order to gain insights into how they support and prepare their child in negotiating safe eating out experiences.MethodsA cross-sectional, qualitative design was used. In depth, semi-structured interviews were carried out with 15 caregivers of children with FH. Interviews were analysed using framework analysis.ResultsCaregivers reported a number of issues relating to eating out with their FH child, or allowing their child to eat out without their supervision. Through themes of ‘family context’, ‘child-focused concerns’, and ‘venue issues’, caregivers described how they managed these and explained the limitations and sacrifices that FH imposed on their child, themselves, and family members.ConclusionsThrough deeper understanding of the anxieties, negotiations and compromises experienced by caregivers of children with FH when they are eating out, clinicians and support charities can tailor their support to meet the needs of caregivers and children. Support and education provision should focus on providing caregivers of children with FH the tools and strategies to help enable safe eating out experiences.

Sudden unexpected death in epilepsy (SUDEP) is possibly the most common cause of death as a result of complications from epilepsy, accounting for between 7.5% to 17% of all epilepsy-related deaths1 and 50% of all deaths in refractory epilepsy.2 The UK has 600 000 people with epilepsy (PWE), 30% being treatment resistant. Sudden death is 20-fold higher in PWE than the general population. Epilepsy is the fifth highest cause of life-years lost in men and eighth in women in the UK. The public health burden of SUDEP alone is estimated as second only to stroke among neurological conditions.3 Forty-two per cent of all deaths are considered avoidable.4 Consequently, the National Institute for Health and Care Excellence (NICE) epilepsy guidelines in 2004 and 20125 recommend discussion of SUDEP with newly-diagnosed PWE. This is rarely delivered and until recently only 4% of PWE had a recorded SUDEP discussion.6 In their current publication of the NHS Outcomes Framework, the government prioritises the prevention of amenable mortality, making it a core focus for NHS services. Epilepsy mortality features in new NICE Standards as well as NICE Clinical Guidelines.5 However, the dilemma remains of when, where, how, and what to discuss about epilepsy risk, especially SUDEP. Further to the discussion there is a lack of a structured monitoring of risk especially in primary care. Meaningful management of SUDEP risk in particular, and epilepsy risk in general, is arbitrary, non-person centred and with no evidenced mechanism. In clinical practice, especially in primary care, the lack of any tools to support risk management is of concern. Risk management has been highlighted as vitally important to reducing avoidable epilepsy-related deaths, both in research and reporting but also via Prevention of Future Death reports …

Epilepsy is associated with a higher rate of premature death than the general population, and the commonest cause of epilepsy mortality is sudden unexpected death in epilepsy (SUDEP). It is difficult to quantify because of the variable reporting of this cause of death. Death occurs due to autonomic deregulation of cardio-respiratory pathways as a result of seizures. Measures to reduce cardio-respiratory dysfunction are discussed together with the importance of seizure control in preventing SUDEP. The role of seizure detection devices, antiepileptic drugs and the importance of providing information about SUDEP to people with epilepsy are highlighted. There is increasing interest in SUDEP and some current initiatives are discussed.