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?

This is the final version. Available on open access from Elsevier via the DOI in this recordBACKGROUND 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.National Institute for Health and Care Research (NIHR)National Health and Medical Research Council (NHMRC

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

This is the final version. Available from BMJ Publishing Group via the DOI in this record. 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.National Institute for Health and Care Research (NIHR)National Health and Medical Research Council (NHMRC, Australia)Victorian Government’s Operational Infrastructure Support Progra

Health professionals’ initial experiences and perceptions of the acceptability of a whole-hospital, pro-active electronic paediatric early warning system (the DETECT study): a qualitative interview study

Background: Paediatric early warning systems (PEWS) alert health professionals to signs of a child’s deterioration with the intention of triggering an urgent review and escalating care. They can reduce unplanned critical care transfer, cardiac arrest, and death. Electronic systems may be superior to paper-based systems. The objective of the study was to critically explore the initial experiences and perceptions of health professionals about the acceptability of DETECT e-PEWS, and what factors influence its acceptability. Methods: A descriptive qualitative study (part of The DETECT study) was undertaken February 2020–2021. Single, semi-structured telephone interviews were used. The setting was a tertiary children’s hospital, UK. The participants were health professionals working in study setting and using DETECT e-PEWS. Sampling was undertaken using a mix of convenience and snowballing techniques. Participants represented two user-groups: ‘documenting vital signs’ (D-VS) and ‘responding to vital signs’ (R-VS). Perceptions of clinical utility and acceptability of DETECT e-PEWS were derived from thematic analysis of transcripts. Results: Fourteen HPs (12 nurses, 2 doctors) participated; seven in D-VS and seven in the R-VS group. Three main themes were identified: complying with DETECT e-PEWS, circumventing DETECT e-PEWS, and disregarding DETECT e-PEWS. Overall clinical utility and acceptability were deemed good for HPs in the D-VS group but there was diversity in perception in the R-VS group (nurses found it more acceptable than doctors). Compliance was better in the D-VS group where use of DETECT e-PEWS was mandated and used more consistently. Some health professionals circumvented DETECT e-PEWS and fell back into old habits. Doctors (R-VS) did not consistently engage with DETECT e-PEWS, which reduced the acceptability of the system, even in those who thought the system brought benefits. Conclusions: Speed and accuracy of real-time data, automation of triggering alerts and improved situational awareness were key factors that contributed to the acceptability of DETECT e-PEWS. Mandating use of both recording and responding aspects of DETECT e-PEWS is needed to ensure full implementation

Parents’ experiences and perceptions of the acceptability of a whole-hospital, pro-active electronic pediatric early warning system (the DETECT study): A qualitative interview study

Background: Failure to recognize and respond to clinical deterioration in a timely and effective manner is an urgent safety concern, driving the need for early identification systems to be embedded in the care of children in hospital. Pediatric early warning systems (PEWS) or PEW scores alert health professionals (HPs) to signs of deterioration, trigger a review and escalate care as needed. PEW scoring allows HPs to record a child’s vital signs and other key data including parent concern. Aim: This study aimed to explore the experiences and perceptions of parents about the acceptability of a newly implemented electronic surveillance system (the DETECT surveillance system), and factors that influenced acceptability and their awareness around signs of clinical deterioration and raising concern. Methods: Descriptive, qualitative semi-structured telephone interviews were undertaken with parents of children who had experienced a critical deterioration event (CDE) (n = 19) and parents of those who had not experienced a CDE (non-CDE parents) (n = 17). Data were collected between February 2020 and February 2021. Results: Qualitative data were analyzed using generic thematic analysis. Analysis revealed an overarching theme of trust as a key factor that underpinned all aspects of children’s vital signs being recorded and monitored. The main themes reflect three domains of parents’ trust: trust in themselves, trust in the HPs, and trust in the technology. Conclusion: Parents’ experiences and perceptions of the acceptability of a whole-hospital, pro-active electronic pediatric early warning system (The DETECT system) were positive; they found it acceptable and welcomed the use of new technology to support the care of their child

Clinical utility and acceptability of a whole-hospital, pro-active electronic paediatric early warning system (the DETECT study): a prospective e-survey of parents and health professionals.

Background Paediatric early warning systems (PEWS) are a means of tracking physiological state and alerting healthcare professionals about signs of deterioration, triggering a clinical review and/or escalation of care of children. A proactive end-to-end deterioration solution (the DETECT surveillance system) with an embedded e-PEWS that included sepsis screening was introduced across a tertiary children’s hospital. One component of the implementation programme was a sub-study to determine an understanding of the DETECT e-PEWS in terms of its clinical utility and its acceptability. Aim This study aimed to examine how parents and health professionals view and engage with the DETECT e-PEWS apps, with a particular focus on its clinical utility and its acceptability. Method A prospective, closed (tick box or sliding scale) and open (text based) question, e-survey of parents (n=137) and health professionals (n=151) with experience of DETECT e-PEWS. Data were collected between February 2020 and February 2021. Results Quantitative data were analysed using descriptive and inferential statistics and qualitative data with generic thematic analysis. Overall, both clinical utility and acceptability (across seven constructs) were high across both stakeholder groups although some challenges to utility (e.g., sensitivity of triggers within specific patient populations) and acceptability (e.g., burden related to having to carry extra technology) were identified. Conclusion Despite the multifaceted nature of the intervention and the complexity of implementation across a hospital, the system demonstrated clinical utility and acceptability across two key groups of stakeholders: parents and health professionals

Complement as an Endogenous Adjuvant for Dendritic Cell-Mediated Induction of Retrovirus-Specific CTLs

Previous studies have demonstrated the involvement of complement (C) in induction of efficient CTL responses against different viral infections, but the exact role of complement in this process has not been determined. We now show that C opsonization of retroviral particles enhances the ability of dendritic cells (DCs) to induce CTL responses both in vitro and in vivo. DCs exposed to C-opsonized HIV in vitro were able to stimulate CTLs to elicit antiviral activity significantly better than non-opsonized HIV. Furthermore, experiments using the Friend virus (FV) mouse model illustrated that the enhancing role of complement on DC-mediated CTL induction also occurred in vivo. Our results indicate that complement serves as natural adjuvant for DC-induced expansion and differentiation of specific CTLs against retroviruses

Vitamin D Deficiency in Children with a Chronic Illness-Seasonal and Age-Related Variations in Serum 25-hydroxy Vitamin D Concentrations

Peer reviewe

Pengaruh Beban Kerja Terhadap Keinginan Untuk Pindah Dan Peran Puasnya Pekerjaan Sebagai Variabel Mediasi (Studi Pada Tenaga Kerja Di PT. Magnum Kota Malang)

Abstrak Sumber daya manusia berperan penting dalam  meningkatkan kemajuan perusahan perusahan, salah satu tindakan agar karyawan tidak melakukan pindah kerja yaitu memperhatikan beban kerja dan kepuasan krja. Tujuan penelitian ini mengetahui pengaruh beban kerja berdampak berkeinginan untuk keluar dan peran puasnya pekerjaan kerja sebagai mediator tenaga kerja di PT Magnum Kota Malang. secara parsial dan simultan. Penelitian yang digunakan merupakan penelitian dengan menggunakan metode kuantitatif. Penentuan sampel penelitian ini menggunakan total sampling sehingga didapatkan sampel penelitian sebanyak 50 responden. Teknik pengumpulan data yang digunakan oleh peneliti adalah kuesioner. Metode analisa yang digunakan yaitu anisis jalur (path analisis). Hasil penelitian membuktikannya. Volume pekerjaan mempengaruhinya keinginan untuk pindah  pada karyawan, Beban kerja berpengaruh terhadap kepuasan kerja pada  karyawan, Kepuasan kerja berpengaruh terhadap keinginan untuk pindah karyawan,. Beban kerja dengan peran kepuasan kerja sebagai variabel mediasi berpengaruh berdampak berkeinginan untuk keluar pada tenaga kerja.Kata Kunci: Beban tenaga kerja, Keinginan Untuk Pindah, Kepuasan KerjaAbstract Human resources play an important role in improving the progress of the company, one of the actions so that employees do not change jobs is to pay attention to workload and job satisfaction. The purpose of this study was to determine the effect of workload on the desire to move and job satisfaction as a mediating variable on employees at PT Magnum Malang City partially and simultaneously. The research used is a research using quantitative methods. Determination of the sample of this study using total sampling so that the research sample obtained was 50 respondents. The data collection technique used by the researcher is a questionnaire. The analytical method used is path analysis. Research results prove it. Workload affects the desire to move, workload affects job satisfaction on employees, work goals affect the desire to move employees. Workload with the role of job satisfaction as a mediating variable affects the desire to move to employees.Keywords: Employee Workload, Desire to Move, Job Satisfactio