Mind and skin: Exploring the links between inflammation, sleep disturbance and neurocognitive function in patients with atopic dermatitis.

Atopic dermatitis (AD) is a chronic, pruritic and inflammatory, dry skin condition with many known comorbidities. These include airway disease, food allergies, atopic eye disease and autoimmune conditions. Furthermore, there is often significant sleep disturbance as well as increased psychological distress and mental health problems. Severe AD therefore often has a significant impact on the quality of life of both patients and their families. In this review we discuss recent findings on the putative links between AD, its association with itch, sleep disturbance and neuropsychiatric morbidity, including the role of inflammation in these conditions. Itch was thought to predominantly drive sleep disruption in AD. We now understand changes in sleep influence immune cell distribution and the associated inflammatory cytokines, which suggests a bidirectional relationship between AD and sleep. We also increasingly recognize inflammation as a key driver in psychological symptoms and disorders. The link between cutaneous, systemic and possible brain inflammation could at least in part be driven by the sleep deprivation and itch-driven neuronal proliferation seen in AD.

A cross-sectional survey of healthcare professionals supporting children and young people with epilepsy and their parents/carers: which topics are raised in clinical consultations and can healthcare professionals provide the support needed?

BACKGROUND AND PURPOSE: Children and young people (CYP) with epilepsy see healthcare professionals (HCPs) for management of their seizures but may require information, advice and support with a range of broader topics. The purpose of the survey was to identify from HCPs, which topics CYP with epilepsy and their parents/carers ask about other than seizure management, and how adequately HCPs feel able to support them with these topics. METHOD: A cross-sectional online survey was used to collect data. Adverts which included a link to the survey were shared via social media channels, professional networks and United Kingdom (UK)-based epilepsy networks. Eighty-eight HCPs in the UK (who worked with CYP with epilepsy and their parents/carers) completed the survey. Quantitative data are presented descriptively. Qualitative data (free-text responses) were reflexively thematically analysed. RESULTS: CYP with epilepsy and their parents/carers were reported to ask HCPs for information, advice and support about a range of topics, most commonly, cognition and mental health. CYP were reported as also frequently asking about aspects of their social life while parents/carers commonly asked about sleep. HCPs varied in how able they felt to adequately support families about these topics, as well as in their views about which resources could be most useful. Having insufficient time and a lack of suitable services and resources to refer to, or draw upon, were key barriers to HCPs being able to support CYP and their families. DISCUSSION: Findings highlight the broad array of topics CYP with epilepsy and their families are reported as seeking support for. HCPs identified gaps in services and their abilities to meet those needs. There appeared to be a mismatch between the support that families were seeking and the ability of HCPs to meet these needs. Findings have implications for how HCPs could best be supported to deal with topics raised by CYP and families in clinic, highlighting the potential usefulness of informational resources on key topics for HCPs, parents/carers and CYP.

'No one's ever said anything about sleep': A qualitative investigation into mothers' experiences of sleep in children with epilepsy.

INTRODUCTION: Sleep problems in children with epilepsy (CWE) are common. However, little is known about parental experiences and feelings about managing sleep in their CWE. To provide the most appropriate services' provision, it is essential that the lived experience of parents of this patient group and the issues and problems that they face in managing their child's sleep is understood. METHOD: In 2018, nine mothers of CWE (aged 5-15 years) were interviewed about their perceptions and experiences around their child's sleep, sleep problems and their management, the impact of sleep difficulties on the child and their family and available support. RESULTS: Four themes were identified that represented the nature of the child's sleep problems, including settling and night-waking issues, parasomnias and child anxiety around sleep. Seven themes represented mothers' experiences of managing their child's sleep and any associated problems, including the longstanding challenging nature of child sleep issues, management strategies adopted, challenges related to managing sleep over time, the link between sleep and seizures, the negative impact of poor sleep on daytime functioning, role of antiseizure medication and maternal concerns about child sleep. One theme represented the perceived lack of information, help and support available. CONCLUSIONS: Findings suggest there are unmet needs in supporting parents to deal with sleep, sleep problems and their management in CWE. PATIENT OR PUBLIC CONTRIBUTION: This individual study was conducted under the umbrella of the CASTLE research programme (see https://castlestudy.org.uk/). Parents who have lived experience of parenting a child with epilepsy were co-applicants for the programme and were involved in the original conception, aims, design and funding application for the research programme (including the project reported in this paper) and advised on project design. Mothers of CWE who have lived experience of managing sleep and sleep problems in their child were participants who shared their experiences through the interviews, which formed the data of the current study.

Reassessment of the risk of narcolepsy in children in England 8 years after receipt of the AS03-adjuvanted H1N1 pandemic vaccine: A case-coverage study.

BACKGROUND: Early studies of narcolepsy after AS03-adjuvanted pandemic A/H1N12009 vaccine (Pandemrix) could not define the duration of elevated risk post-vaccination nor the risk in children aged under 5 years who may not present until much older. METHODS/FINDINGS: Clinical information and sleep test results, extracted from hospital notes at 3 large pediatric sleep centers in England between September 2017 and June 2018 for narcolepsy cases aged 4-19 years with symptom onset since January 2009, were reviewed by an expert panel to confirm the diagnosis. Vaccination histories were independently obtained from general practitioners (GPs). The odds of vaccination in narcolepsy cases compared with the age-matched English population was calculated after adjustment for clinical conditions that were indications for vaccination. GP questionnaires were returned for 242 of the 244 children with confirmed narcolepsy. Of these 5 were under 5 years, 118 were 5-11 years, and 119 were 12-19 years old at diagnosis; 39 were vaccinated with Pandemrix before onset. The odds ratio (OR) for onset at any time after vaccination was 1.94 (95% confidence interval [CI] 1.30-2.89), The elevated risk period was restricted to onsets within 12 months of vaccination (OR 6.65 [3.44-12.85]) and was highest within the first 6 months. After one year, ORs were not significantly different from 1 up to 8 years after vaccination. The ORs were similar in under five-year-olds and older ages. The estimated attributable risk was 1 in 34,500 doses. Our study is limited by including cases from only 3 sleep centers, who may differ from cases diagnosed in nonparticipating centers, and by imprecision in defining the centers' catchment population. The potential for biased recall of onset shortly after vaccination in cases aware of the association cannot be excluded. CONCLUSIONS: In this study, we found that vaccine-attributable cases have onset of narcolepsy within 12 months of Pandemrix vaccination. The attributable risk is higher than previously estimated in England because of identification of vaccine-attributable cases with late diagnoses. Absence of a compensatory drop in risk 1-8 years after vaccination suggests that Pandemrix does not trigger onsets in those in whom narcolepsy would have occurred later.

Epilepsy-specific patient-reported outcome measures of children's health-related quality of life: A systematic review of measurement properties.

OBJECTIVE: To identify and appraise published evidence of the measurement properties for epilepsy-specific patient-reported outcome measures (PROMs) of children's health-related quality of life (HRQoL). METHODS: We searched multiple databases for studies evaluating the measurement properties of English-language epilepsy-specific PROMs of children's HRQoL. We assessed the methodological quality using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guidance. We extracted data about the content validity, construct validity, internal consistency, test-retest reliability, proxy reliability, responsiveness, and precision, and assessed the measurement properties with reference to standardized criteria. RESULTS: We identified 27 papers that evaluated 11 PROMs. Methodological quality was variable. Construct validity, test-retest reliability, and internal consistency were more commonly assessed. Quality of Life in Childhood Epilepsy (QoLCE) questionnaires are parent-reported and evaluated more than other PROMs; QoLCE-55 has good and replicated evidence for structural and construct validity and internal consistency. Health-Related Quality of Life Measure for Children with Epilepsy (CHEQoL) has both child and parent-reported versions and good evidence of content, structural, and construct validity. SIGNIFICANCE: This review identified two leading candidate epilepsy-specific PROMs for measuring health-related quality of life in children. Establishing evidence of the responsiveness of PROMs is a priority to help the interpretation of meaningful change scores.

Mapping epilepsy-specific patient-reported outcome measures for children to a proposed core outcome set for childhood epilepsy.

OBJECTIVE: The objectives of the study were to (1) map questions in epilepsy-specific patient-reported outcome measures (PROMs) of children's health-related quality of life (HRQoL) to a proposed core outcome set (COS) for childhood epilepsy research and (2) gain insight into the acceptability of two leading candidate PROMs. METHOD: We identified 11 epilepsy-specific PROMs of children's HRQoL (17 questionnaire versions) in a previous systematic review. Each item from the PROMs was mapped to 38 discrete outcomes across 10 domains of the COS: seizures, sleep, social functioning, mental health, cognition, physical functioning, behavior, adverse events, family life, and global quality of life. We consulted with three children with epilepsy and six parents of children with epilepsy in Patient Public Involvement and Engagement (PPIE) work to gain an understanding of the acceptability of the two leading PROMs from our review of measurement properties: Quality of Life in Childhood Epilepsy (QOLCE-55) and Health-Related Quality of Life Measure for Children with Epilepsy (CHEQOL). RESULTS: Social Functioning is covered by all PROMs except DISABKIDS and G-QOLCE and Mental Health is covered by all PROMs except G-QOLCE and Hague Restrictions in Childhood Epilepsy Scale (HARCES). Only two PROMs (Epilepsy and Learning Disability Quality of Life (ELDQOL) and Glasgow Epilepsy Outcome Scale (GEOS-YP)) have items that cover the Seizure domain. The QOLCE-55 includes items that cover the domains of Physical Functioning, Social Functioning, Behavior, Mental Health, and Cognition. The CHEQOL parent and child versions cover the same domains as QOLCE-55 except for Physical Functioning and Behavior, and the child version has one item that covers the discrete outcome of Overall Quality of Life and one item that covers the discrete outcome of Relationship with parents and siblings. The QOLCE-55 parent version was acceptable to the parents we consulted with, and CHEQOL parent and child versions were described as acceptable to our child and parent advisory panel members. SIGNIFICANCE: Mapping items from existing epilepsy-specific PROMs for children is an important step in operationalizing our COS for childhood epilepsy research, alongside evaluation of their measurement properties. Two leading PROMS, QOLCE-55 and CHEQOL, cover a wide range of domains from our COS and would likely be used in conjunction with assessment tools selected for specific study objectives. The PPIE work provided practical insights into the administration and acceptability of candidate PROMs in appropriate context. We promote our COS as a framework for selecting outcomes and PROMs for future childhood epilepsy evaluative research.

Obstructive Sleep Apnoea Contributes to Executive Function Impairment in Young Children with Down Syndrome.

OBJECTIVE/BACKGROUND: Children with Down syndrome (DS) commonly experience difficulties with executive function (EF). They are also vulnerable to obstructive sleep apnoea (OSA). OSA is associated with EF deficits in typically developing children. A recent study reported an association between OSA and cognitive deficits in 38 school-aged children with DS. We experimentally investigated EF behaviours in young children with DS, and their association with OSA. PARTICIPANTS AND METHODS: Children with DS were recruited to take part in a larger study of OSA (N = 202). Parents of 80 children (50 male) aged 36 to 71 months (M = 56.90, SD = 10.19 months) completed the Behavior Rating Inventory of Executive Function - Preschool Version (BRIEF-P). Of these 80 children, 69 were also successfully studied overnight with domiciliary cardiorespiratory polygraphy to diagnose OSA. RESULTS: Obstructive apnoea/hypopnoea index was in the normal range (0-1.49/h) for 28 children but indicated OSA (≥1.5/h) in 41 children. Consistent with previous research, we found a large effect for children experiencing particular weaknesses in working memory, planning and organising, whilst emotional control was a relative strength. OSA was associated with poorer working memory (ß = .23, R2 = .05, p = .025), emotional control (ß = .20, R2 = .04, p = .047) and shifting (ß = .24, R2 = .06, p = .023). CONCLUSIONS: Findings suggest that known EF difficulties in DS are already evident at this young age. Children with DS already have limited cognitive reserve and can ill afford additional EF deficit associated with OSA. OSA is amenable to treatment and should be actively treated in these children to promote optimal cognitive development.

Core Health Outcomes in Childhood Epilepsy (CHOICE): Development of a core outcome set using systematic review methods and a Delphi survey consensus.

OBJECTIVE: Establishing a core set of outcomes to be evaluated and reported in intervention trials aims to improve the usefulness of health research. There is no established core outcome set (COS) for childhood epilepsies. The aim of this study was to select a COS to be used in evaluative research of interventions for children with rolandic epilepsy (RE). METHODS: We followed guidance from the COMET (Core Outcome Measures in Effectiveness Trials) Initiative. First, we identified outcomes that had been measured in research through a systematic review. Second, young people with RE, parents, and professionals were invited to take part in a Delphi survey in which participants rated the importance of candidate outcomes. Last, a face-to-face meeting was convened to seek consensus on which outcomes were critical to include and to ratify the final COS. RESULTS: From 37 eligible papers in the review, we identified and included 48 candidate outcomes in the survey. We sent invitations to 165 people registered to take part in the survey; of these, 102 (62%) completed Round 1, and 80 (78%) completed Round 2 (three young people, 16 parents, 61 professionals). In Round 2 we included four additional outcomes suggested by participants in Round 1. The consensus meeting included two young people, four parents, and nine professionals who were eligible to vote and ratified the COS as 39 outcomes across 10 domains. SIGNIFICANCE: Our methodology was a proportionate and pragmatic approach toward producing a COS for evaluating research on interventions aiming to improve the health of children with RE.

Development and psychometric properties of the parent version of the Profile of Neuropsychiatric Symptoms (PONS) in children and adolescents.

BACKGROUND: The use of neuropsychiatric Patient Centred Outcome Measures (PCOMs) in routine child mental health and paediatric services is very time consuming and often requires multiple scales being completed as no single scale covers all areas of psychopathology. The use of a web-based programme can overcome these problems and contribute to improved use of PCOMs in clinical practice. We aim to develop a web-based scale (using HealthTracker™) to screen and identify young people with significant neuropsychiatric symptoms to enable early intervention. METHODS: Qualitative development of the Profile of Neuropsychiatric Symptoms (PONS) and quantitative evaluation of the psychometric properties of the PONS scale (parent version). Parents of 929 from the general population and 147 with neuropsychiatric disorders (5-18 years old) completed the PONS online. In addition, those children with neuropsychiatric disorders were assessed for the presence of current and lifetime psychiatric disorders using the Development and Well-Being Assessment (DAWBA). RESULTS: The PONS scale (parent version) consists of 30 symptom domains rated on a 7-point scale for both frequency and impairment. We found an intra-class correlation coefficient for single measures was 0.44 (0.42-0.46 95 % CI, F = 22.84, p ≤ 0.0001) and for average measures was 0.96 (0.95-0.96 95 % CI, F = 22.84, p ≤ 0.0001). The factor analysis showed a 4-factor model: Neurodevelopmental Disability; Behavioural and Emotional Dysregulation; Psychoses and Personality Dysfunction; and Anxiety and Depression. The receiver operating characteristic area for the 4-factors was 0.96 (SE = 0.006; 0.95-0.97 95 % CI). CONCLUSIONS: The PONS scale (parent version) is a web-based PCOM on the HealthTracker™ system that is a rapid, engaging measure that has excellent reliability and validity. The system allows for automated scoring and immediate feedback of statistical cut-off points and assists clinicians with diagnostic decision-making and optimises use of clinician time.

International consensus on sleep problems in pediatric palliative care: Paving the way.

OBJECTIVE: Sleep problems constitute a common and heterogeneous complaint in pediatric palliative care (PPC), where they often contribute to disease morbidity and cause additional distress to children and adolescents and their families already facing the burden of life-threatening and life-limiting conditions. Despite the significant impact of sleep problems, clinical evidence is lacking. The application of general pediatric sleep recommendations appears insufficient to address the unique challenges of the PPC dimension in terms of disease variability, duration, comorbidities, complexity of needs, and particular features of sleep problems related to hospice care. Therefore, we initiated an international project aimed at establishing a multidisciplinary consensus. METHODS: A two-round Delphi approach was adopted to develop recommendations in the areas of Definition, Assessment/Monitoring, and Treatment. After selecting a panel of 72 worldwide experts, consensus (defined as ≥75% agreement) was reached through an online survey. RESULTS: At the end of the two voting sessions, we obtained 53 consensus recommendations based on expert opinion on sleep problems in PPC. CONCLUSIONS: This study addresses the need to personalize sleep medicine's approach to the palliative care setting and its peculiarities. It provides the first international consensus on sleep problems in PPC and highlight the urgent need for global guidance to improve sleep-related distress in this vulnerable population and their caregivers. Our findings represent a crucial milestone that will hopefully enable the development of guidelines in the near future.

Sleep patterns in children with ADHD: a population-based cohort study from birth to 11 years.

Associations between sleep duration and disturbance in infancy and early childhood and attention deficit hyperactivity disorder diagnoses were investigated. Data from the Avon Longitudinal Study of Parents and Children, a population-based prospective longitudinal birth-cohort study of children born in 1991-1992 in South-West England, were employed. Eight thousand, one hundred and ninety-five children were assessed using the Development and Well-Being Assessment. One hundred and seventy-three cases (2.1%) met criteria for attention deficit hyperactivity disorder. Parental report at eight time points showed children with attention deficit hyperactivity disorder slept less than peers. Absolute differences were small and mainly restricted to night-time sleep, with no strong evidence of differences from controls, except at 69 months [5 years 9 months; 12 min (95% CI: 5-19), P = 0.001], at 81 months [6 years 9 months; 15 min (95% CI: 8-22), P < 0.001] and at 115 months [9 years 7 months; 11 min (95% CI: 4-18), P = 0.001]. The attention deficit hyperactivity disorder group had more night-waking at every age, significant from about 5 years. When tracking children's sleep along a normative centiles chart, a shift in sleep duration from one centile to a lower centile was a useful predictor of attention deficit hyperactivity disorder. Age-specific decreases of >1SD in sleep duration across adjacent time points was a significant predictor of attention deficit hyperactivity disorder at 3-5 years (P = 0.047). In children with attention deficit hyperactivity disorder, shorter sleep duration and sleep disturbances appear early and predate the usual age of clinical diagnosis. The rate of change of sleep duration relative to an individual, rather than absolute sleep duration at any stage, may prove beneficial in identifying increased risk of attention deficit hyperactivity disorder.

Narcolepsy and H1N1 vaccination: a link?

PURPOSE OF REVIEW: A number of European countries have reported a dramatic increase in the rates of childhood narcolepsy with cataplexy in children immunized with a split-virion adjuvanted swine flu vaccine. Here, we review the strengths and weaknesses of these epidemiological studies and possible neuroimmunological mechanisms. RECENT FINDINGS: Initial concerns of a 13-fold increased relative risk of narcolepsy were raised by the Scandinavian health protection agencies in 2010. Subsequent retrospective studies support these findings in Canada, France, Ireland, England and Denmark. The cases are predominantly young children who present with severe and rapid onset of cataplexy as well as narcolepsy often within a few weeks of vaccination. The proposed mechanism for postvaccination narcolepsy is one in which an environmental trigger causes or enhances an antibody-mediated autoimmune response in patients with a preexisting genetic susceptibility. However, there have not yet been any reports of specific autoimmunity, either antibody or T-cell-mediated. SUMMARY: There is a strong association between narcolepsy and H1N1 vaccination. However, whether this reflects a true increase in affected individuals or a hastening of disease onset in individuals who would otherwise have developed narcolepsy later will become clear in the coming years. The pathological explanation of this association and narcolepsy is likely to be autoimmune, although supportive evidence is lacking.Video abstract available: See the Video Supplementary Digital Content 1 (http://links.lww.com/COPM/A9).

The impact of parent treatment preference and other factors on recruitment: lessons learned from a paediatric epilepsy randomised controlled trial.

BACKGROUND: In paediatric epilepsy, the evidence of effectiveness of antiseizure treatment is inconclusive for some types of epilepsy. As with other paediatric clinical trials, researchers undertaking paediatric epilepsy clinical trials face a range of challenges that may compromise external validity MAIN BODY: In this paper, we critically reflect upon the factors which impacted recruitment to the pilot phase of a phase IV unblinded, randomised controlled 3×2 factorial trial examining the effectiveness of two antiseizure medications (ASMs) and a sleep behaviour intervention in children with Rolandic epilepsy. We consider the processes established to support recruitment, public and patient involvement and engagement (PPIE), site induction, our oversight of recruitment targets and figures, and the actions we took to help us understand why we failed to recruit sufficient children to continue to the substantive trial phase. The key lessons learned were about parent preference, children's involvement and collaboration in decision-making, potential and alternative trial designs, and elicitation of stated preferences pre-trial design. Despite pre-funding PPIE during the trial design phase, we failed to anticipate the scale of parental treatment preference for or against antiseizure medication (ASMs) and consequent unwillingness to be randomised. Future studies should ensure more detailed and in-depth consultation to ascertain parent and/or patient preferences. More intense engagement with parents and children exploring their ideas about treatment preferences could, perhaps, have helped predict some recruitment issues. Infrequent seizures or screening children close to natural remission were possible explanations for non-consent. It is possible some clinicians were unintentionally unable to convey clinical equipoise influencing parental decision against participation. We wanted children to be involved in decisions about trial participation. However, despite having tailored written and video information to explain the trial to children we do not know whether these materials were viewed in each consent conversation or how much input children had towards parents' decisions to participate. Novel methods such as parent/patient preference trials and/or discrete choice experiments may be the way forward. CONCLUSION: The importance of diligent consultation, the consideration of novel methods such as parent/patient preference trials and/or discrete choice experiments in studies examining the effectiveness of ASMs versus no-ASMs cannot be overemphasised even in the presence of widespread clinician equipoise.

Changing Agendas on Sleep, Treatment and Learning in Epilepsy (CASTLE) Sleep-E: a protocol for a randomised controlled trial comparing an online behavioural sleep intervention with standard care in children with Rolandic epilepsy.

INTRODUCTION: Sleep and epilepsy have an established bidirectional relationship yet only one randomised controlled clinical trial has assessed the effectiveness of behavioural sleep interventions for children with epilepsy. The intervention was successful, but was delivered via face-to-face educational sessions with parents, which are costly and non-scalable to population level. The Changing Agendas on Sleep, Treatment and Learning in Epilepsy (CASTLE) Sleep-E trial addresses this problem by comparing clinical and cost-effectiveness in children with Rolandic epilepsy between standard care (SC) and SC augmented with a novel, tailored parent-led CASTLE Online Sleep Intervention (COSI) that incorporates evidence-based behavioural components. METHODS AND ANALYSES: CASTLE Sleep-E is a UK-based, multicentre, open-label, active concurrent control, randomised, parallel-group, pragmatic superiority trial. A total of 110 children with Rolandic epilepsy will be recruited in outpatient clinics and allocated 1:1 to SC or SC augmented with COSI (SC+COSI). Primary clinical outcome is parent-reported sleep problem score (Children's Sleep Habits Questionnaire). Primary health economic outcome is the incremental cost-effectiveness ratio (National Health Service and Personal Social Services perspective, Child Health Utility 9D Instrument). Parents and children (≥7 years) can opt into qualitative interviews and activities to share their experiences and perceptions of trial participation and managing sleep with Rolandic epilepsy. ETHICS AND DISSEMINATION: The CASTLE Sleep-E protocol was approved by the Health Research Authority East Midlands (HRA)-Nottingham 1 Research Ethics Committee (reference: 21/EM/0205). Trial results will be disseminated to scientific audiences, families, professional groups, managers, commissioners and policymakers. Pseudo-anonymised individual patient data will be made available after dissemination on reasonable request. TRIAL REGISTRATION NUMBER: ISRCTN13202325.

Feasibility and parental perception of home sleep studies during COVID-19: a tertiary sleep centre experience.

OBJECTIVE: Rapid implementation of home sleep studies during the first UK COVID-19 'lockdown'-completion rates, family feedback and factors that predict success. DESIGN: We included all patients who had a sleep study conducted at home instead of as inpatient from 30 March 2020 to 30 June 2020. Studies with less than 4 hours of data for analysis were defined 'unsuccessful'. RESULTS: 137 patients were included. 96 underwent home respiratory polygraphy (HRP), median age 5.5 years. 41 had oxycapnography (O2/CO2), median age 5 years. 56% HRP and 83% O2/CO2 were successful. A diagnosis of autism predicted a lower success rate (29%) as did age under 5 years. CONCLUSION: Switching studies rapidly from an inpatient to a home environment is possible, but there are several challenges that include a higher failure rate in younger children and those with neurodevelopmental disorders.

Development and Evaluation of the CASTLE Trial Online Sleep Intervention for Parents of Children with Epilepsy.

Introduction: Many of the sleep problems experienced by children with epilepsy (CWE) have the same behavioural basis as common sleep problems seen in typically developing (TD) children. Behavioural sleep interventions (BSIs) are widely used to treat these sleep problems in TD children and are hypothesised to be effective for CWE. However, specific considerations need to be addressed and incorporated into a BSI for CWE to ensure the intervention is tailored to this population's needs. This paper details developing and tailoring an online BSI for parents of CWE, to be used in the CASTLE (Changing Agendas on Sleep, Treatment and Learning in Epilepsy) Sleep-E clinical trial. Method: In phase one, two existing theory-driven paediatric BSIs were adapted into a novel online behavioural sleep intervention (CASTLE Online Sleep Intervention or COSI) which specifically incorporated the needs and requirements reported by nine parents of CWE. Scoping their needs included conducting interviews with three CWE so that they could contribute to the overall intervention content. In phase two, six of these parents evaluated COSI, reviewing and feeding back on COSI until parental approval for content and functionality was achieved. Results: In phase one, a range of adaptations was made to the content and presentation of standardised intervention material to acknowledge and emphasise the key seizure-specific issues to ensure COSI best met parents of CWE's needs. Adaptations included embedding parent and child experiences in the intervention, including particular information requested by parents, such as the links between sleep and seizures and managing child and parental anxieties around sleep, as well as developing functionality to personalise the delivery of content. In phase two, parents confirmed that they found the final version of COSI to be functional and appropriate (after one round of review) for use by parents of CWE and that 100% would recommend it to other families who have CWE. Discussion: It is hoped that the use of evidence-based BSIs, adapted to consider salient epilepsy-specific factors, will increase parent-engagement, COSI's relevance for this particular patient group and overall efficacy in improving sleep in CWE. The effectiveness of COSI will be tested in the CASTLE Sleep-E clinical trial (https://castlestudy.org.uk/).

A Qualitative Investigation Into What Parents Want From an Online Behavioural Sleep Intervention for Children With Epilepsy.

Many of the same sleep problems seen in typically developing (TD) children are frequently experienced by children with epilepsy (CWE). Behavioural sleep interventions (BSIs) are commonly and successfully used to treat these sleep problems in TD children and in some neurodevelopmental disorder populations. Therefore, BSIs should be effective in CWE, however, there are special seizure-related considerations for CWE and their parents which may be salient to consider in any future BSI development for this group. The current study sought to identify, from parents, if there were special considerations for the content and delivery of an online BSI for parents of CWE. Semi-structured interviews were conducted with nine mothers of CWE and thematic analysis was conducted on the interview data. Ten themes were apparent which represented what parents wanted from any online BSI for CWE. Parents wanted (i) other parents' views and real-life experiences to be included, (ii) recognition of how changes over time may influence the appropriateness of using various sleep-management options, (iii) to be presented with a range of sleep management options from which they could select, (iv) personalised information and suggestions for behaviour-change options, (v) help to address child anxiety around sleep, (vi) for the advice and behaviour-change options to be practical, (vii) general educational information about sleep and the relationship between sleep and epilepsy, (viii) for parental worries and concerns to be acknowledged, (ix) to receive help, support, and reassurance around children's sleep; and (x) to include the child in the intervention. It was clear that any online BSI would require specific adaptations and additions (to content and delivery format) to best meet the needs of parents of CWE. It is hoped that having identified what parents want from on online BSI for CWE will allow these factors to be acknowledged in future intervention development, with the intention to optimise parental engagement and intervention effectiveness. Practical suggestions for how these aspects could be integrated into any online BSI are suggested.