Recent Submissions

  • How to be a named or designated doctor for looked-after children.

    Walker, Vicki
    There are approximately 100,000 looked after children within the care system in the UK. Children and young people enter the care system with unmet health needs and missed routine health screening and poor management of existing health conditions. They may have delayed development due to neglect and many have unmet and significant emotional health needs. Named and Designated Doctors for looked after children are passionate experts willing to stand up and advocate for children and young people. They exert influence on a larger scale within the healthcare system, offering senior level problem solving and contributions to interagency liaison and service planning. The Named and Designated roles are statutory in the UK. However, each of the four nations in the UK has slightly different versions of looked after children and safeguarding children legislation. The RCPCH, RCN and RCGPs, which support all four UK nations, have also produced guidance - Looked After Children: Roles and Competencies of Healthcare Staff. The document sets out the required knowledge, skills, and competencies at each level of health professional working with children and young people. This short review summarises some of the key aspects of the role fulfilled by Named and Designated doctors and offers practical advice to those considering the role and some real world examples of how it can be successfully implemented.
  • 671 Are clinicians assessing the impact of social media and/or time spent online on the physical and mental health of adolescents in paediatric admissions?

    Walker, Vicki (2022-08)
    Aims There is significant evidence that prolonged periods of screen time are associated with a variety of negative impacts on adolescent mental and physical wellbeing; namely adiposity, unhealthy diet, depressive symptoms and quality of life (1). However, the evidence-base to support a direct link between 'toxic' screen time causing obesity, mental health problems and educational failure has always been contested (2 3). Current RCPCH guidance on the health impacts of screen time highlights the link between higher screen time and less healthy diets, higher energy intake and obesity. There is a complex relationship between mental health and digital use with positive impacts e.g. maintain social friendships/ groups, support for health conditions, online education and negative impacts e.g. cyber-bullying, body dysmorphia, exploitation/grooming. The aim of this audit was to ascertain whether social media/time spent online is discussed and documented in the admission clerking or the first detailed history. If possible, we wanted to establish any associations between indicators of poor mental and physical health with social media/time spent online The majority of evidence in the current RCPCH guidance is based on television time, but recommendations now need to focus on newer uses of digital media, such as social media. A recommendation to include social media as an important factor in assessing adolescent health and wellbeing was advocated in 2018 (4). Methods We undertook a retrospective review of 40 paediatric admissions in a medium district general hospital. Patients were eligible if they were admitted, for any reason, from 1st January 2021 - 31st May 2021, aged 11 years old and above. Results Of the 38 admissions included, three had documentation regarding social media/time spent online (figure 1); one of these had a HEADSSSS assessment (figure 2). A further two had HEADSSSS assessments without clarifying social media/time spent online. Of these five patients: * Two admission documentations specified time spent online platform (XBOX), of which, one patient had a BMI of 30 * Three HEADSSSS assessments were carried out in patients with a presentation and/or history of mental health problems * Of these, one HEADSSSS assessment specified which social media platform the patient was using, and if they experienced cyber bullying Conclusion Our audit highlights a gap in use of social media screening in paediatric medical histories amongst health care professionals. Good practice was demonstrated for young people presenting with emotional health problems. This was a broad cohort, therefore questions relating to impact of social media may not be appropriate for every patient. The updated HEADSSSS assessment includes a fourth 'S' for social media use (4). Updating the clerking proforma to include this and raising awareness through training will support professionals to appropriately assess for new and evolving factors such as social media use, which are impacting on adolescent physical and mental health.
  • Genomic medicine for the paediatrician.

    Hastings, Richard (Paediatrics and Child Health, 2019-04)
    Genomic medicine is the use of sequence data from an individual's entire genetic code to aid diagnosis and personalise therapeutic options. An important goal of the 100,000 genomes project in the UK is to embed the infrastructure for the widespread use of whole genome sequencing into the National Health Service. Paediatricians will be at the forefront in using this new technology in the diagnosis of children with multiple congenital anomalies, developmental delay and other suspected genetic conditions. This article provides a description of the basic concepts of genomic medicine. The types of genomic testing that are available are discussed and examples of how genomics is already being used in paediatrics are given. Finally, the challenges for genomic medicine are summarised.
  • Does decentralisation of surgical management improve outcomes for paediatric testicular torsion?.

    Ellis, Ricky
    Summary Introduction In testicular torsion (TT), delayed emergency scrotal exploration (ESE) increases the risk of orchidectomy. Transfer of a patient with suspected TT from a district general hospital (DGH) to a paediatric surgical centre (PSC) delays ESE and potentially puts them at increased risk of testicular loss.Prior to 1st January 2017, all boys under aged <16 years presenting to a DGH within the East Midlands Clinical Network (EMCN) would be referred to the PSC. From this date, it was agreed within the EMCN that boys aged ≥5 years with suspected TT presenting to a network DGH would be managed locally, barring exceptional circumstances. Boys aged Methods All patients who underwent ESE under the care of paediatric surgery in the PSC, and all patients <16 years old who underwent ESE in 4 EMCN DGHs between January 2017 and December 2019 were identified. Neonatal cases and inpatient referrals were excluded. Comparison was made with published data on ESE performed in the PSC over the 9 years 2008–2016 prior to decentralisation. Results In the 9 years prior to decentralisation, there were 110 cases of TT in the PSC. In the subsequent 3 years, there were 40 in the PSC and 37 in the DGHs. The orchidectomy rate of boys with TT presenting to DGHs and undergoing exploration locally (16%, 6/37) contrasts with the rate in those transferred from DGHs to the PSC for exploration (58%, 15/26). The difference is highly significant (p = 0.00059, RR 0.28 [95% CI 0.13–0.63]) and indicates that in the EMCN, avoiding hospital transfer and performing ESE at the presenting DGH reduces the risk of orchidectomy by 72%. Conclusion Decentralisation of the provision of ESE in boys with TT has resulted in a significantly lower orchidectomy rate in boys undergoing ESE in the presenting hospital than when transferred to the PSC. This study reinforces existing literature that demonstrates the effect of delayed ESE on orchidectomy rate, and supports the recommendations of national guidelines in the UK that transfer of boys to a PSC for ESE should only occur in exceptional circumstances.
  • Chameleon project: a children’s end-of-life care quality improvement project

    Clements, Helena (BMJ Open Quality, 2021-12)
    In response to there being no specialist paediatric palliative care (PPC) team in a region of England, we undertook a 12-month quality improvement project (funded by National Health Service England’s Marginal Rate Emergency Threshold and Readmission fund) to improve children’s end-of-life care. Improvements were implemented during two plan–do–study–act (PDSA) cycles and included specialist experts, clinical champions, focused education and training, and tools and materials to support identification, care planning and communication. A lead paediatrician with expertise in PPC (10 hours/week) led the project, supported by a PPC nurse (3 days/week) and a network administrator (2 days/week). Children who died an expected death were identified from the child death review teams. Numbers of non-elective hospital admissions, bed days, and costs were identified. Twenty-nine children died an expected death during the 12 months of the project and coincidentally 29 children died an expected death during the previous 12 months. The median number of non-elective admissions in the last 12 months of life was reduced from two per child to one. There was a reduction in specialist hospital (14%) and district general hospital (38%) bed days. The percentage of children who died an expected death who had anticipatory care plans rose from 50% to 72%. The results indicate that a network of clinicians with expertise in PPC working together across a region can improve personalised care planning and reduce admissions and bed days for children in their last year-of-life with reduced bed utilisation costs.
  • Treatment of Multisystem Inflammatory Syndrome in Children

    Struik, Siske (New England Journal of Medicine, 2021-07)
    Background: Evidence is urgently needed to support treatment decisions for children with multisystem inflammatory syndrome (MIS-C) associated with severe acute respiratory syndrome coronavirus 2. Methods: We performed an international observational cohort study of clinical and outcome data regarding suspected MIS-C that had been uploaded by physicians onto a Web-based database. We used inverse-probability weighting and generalized linear models to evaluate intravenous immune globulin (IVIG) as a reference, as compared with IVIG plus glucocorticoids and glucocorticoids alone. There were two primary outcomes: the first was a composite of inotropic support or mechanical ventilation by day 2 or later or death; the second was a reduction in disease severity on an ordinal scale by day 2. Secondary outcomes included treatment escalation and the time until a reduction in organ failure and inflammation. Results: Data were available regarding the course of treatment for 614 children from 32 countries from June 2020 through February 2021; 490 met the World Health Organization criteria for MIS-C. Of the 614 children with suspected MIS-C, 246 received primary treatment with IVIG alone, 208 with IVIG plus glucocorticoids, and 99 with glucocorticoids alone; 22 children received other treatment combinations, including biologic agents, and 39 received no immunomodulatory therapy. Receipt of inotropic or ventilatory support or death occurred in 56 patients who received IVIG plus glucocorticoids (adjusted odds ratio for the comparison with IVIG alone, 0.77; 95% confidence interval [CI], 0.33 to 1.82) and in 17 patients who received glucocorticoids alone (adjusted odds ratio, 0.54; 95% CI, 0.22 to 1.33). The adjusted odds ratios for a reduction in disease severity were similar in the two groups, as compared with IVIG alone (0.90 for IVIG plus glucocorticoids and 0.93 for glucocorticoids alone). The time until a reduction in disease severity was similar in the three groups. Conclusions: We found no evidence that recovery from MIS-C differed after primary treatment with IVIG alone, IVIG plus glucocorticoids, or glucocorticoids alone, although significant differences may emerge as more data accrue. (Funded by the European Union's Horizon 2020 Program and others; BATS ISRCTN number, ISRCTN69546370.).
  • Presenting features of patients with ataxia-telangiectasia (A-T): A scoping review.

    Yule, Alexander (Archives of Disease in Childhood, 2021)
    Background Ataxia-telangiectasia (A-T) is a rare autosomal recessive, progressive, multi-system disease caused by mutations in the ataxia-telangiectasia mutated (ATM) gene on chromosome 11q.26. There are 2 types of A-T; the more severe phenotype of classical A-T with a complete absence of ATM protein kinase, and the milder phenotype of variant A-T in which there is some residual protein kinase activity. A-T has a wide spectrum of manifestations including cerebellar ataxia, movement disorders, ocular telangiectasia, recurrent infections, and an increased risk of malignancy. Although textbook narratives exist describing the clinical features of A-T, no attempt has been made to collate the available information to give a complete picture of the presenting features of this rare disease. Objectives To describe the presenting features of A-T and determine any difference in presenting features between classical and variant A-T. Methods 17 searches were carried out in each of 5 databases (Ovid SP (Medline), EMBASE, Web of Science, PubMed, Scopus). The Cochrane Library was also searched. The search protocol is available. The inclusion criteria were all dates, all languages, all ages, human subjects, and clinical relevance. The exclusion criteria were: no reference to A-T within the article, not an original article, animal studies, article not clinically relevant. Results Search returned 194,890 articles; 14,622 titles and abstracts were reviewed after removing 180,268 duplicates. Full text review of 1,163 articles was performed and 1,039 studies were included (13,459 exclusions, 124 excluded after full text review). The presenting symptoms (first symptom) were reported in 1209 cases with a total of 1702 signs or symptoms included. The most common presenting complaint reported was an abnormal gait (n=931), followed by recurrent infections (n=223), speech difficulties (n=113) and movement disorder and other co-ordination difficulties (n=69). Cerebellar ataxia was the most common pattern of abnormal gait. Although cerebellar ataxia was the most common first presenting feature, chronologically we found other symptoms that presented at an earlier age included recurrent infections and other neurological signs and symptoms. The age of onset of presenting symptoms will be presented in more detail. The median age of diagnosis for classical A-T was 6 years (IQR 3 – 9 years) and for variant it was much later in life with a median age of 30 years 6 months (IQR 19.25–40.25 years). Conclusions A-T has a wide variety of presenting features which is further complicated by a wide difference in the age of diagnosis of between classical and variant A-T. The most common presenting feature was an abnormal gait of which cerebellar ataxia was the most common pattern. However other symptoms appear to present earlier including telangiectasia and recurrent infections and dystonia in variant A-T. It is hoped that by developing a better understanding of the spectrum of presenting features of A-T may reduce the age of diagnosis of both forms of A-T.
  • 1449 Drug drills: improving paediatric team performance and confidence when prescribing and preparing unfamiliar emergency medications

    Shephert, Jennifer; Hesketh, Emma; Hammond, Sophie; Macdonald, Daniella (Archives of Disease in Childhood, 2021)
    Background Emergency medications are infrequently required in district general paediatric departments, however when they are it is important for them to be given in a timely manner. Feedback from local simulation scenarios revealed that prescribing and preparing unfamiliar emergency medications was something that both medical and nursing teams felt anxious about. Regular simulation practice is therefore essential for improving patient care and safety in emergency scenarios. Objectives The aim of this project was to improve paediatric team ability and confidence when prescribing and preparing unfamiliar emergency medications in order to improve patient care and safety. Methods A series of ‘drug drills’ involving emergency medication were created: asthma (salbutamol and magnesium sulphate); sedation (morphine and midazolam); duct dependent cardiac disease (prostaglandin) and septic shock (adrenaline and noradrenaline). Doctors timed how long it took to prescribe the medication after reading a scenario. Nursing staff subsequently timed how long it took them to prepare and administer the medication. Participants completed an online survey after the ‘drug drill’ and were asked to record how long it took for them to complete the drill, and whether they felt more or less confident prescribing/preparing these medications. They were also encouraged to provide feedback and learning points to be shared amongst the team to facilitate shared learning. In future,‘drug drills’ will be repeated to assess whether our performance and confidence has improved as a result of extra practice and group feedback. Results To date, ‘drug drills’ have been completed by 19 doctors and 12 nurses. Preliminary results and feedback have been positive with 100% of staff saying they felt more confident prescribing/preparing medication after completion. As a result of the feedback received, changes have already been implemented to help staff in future. For example, we have increased the stock number of 50ml syringes in the resuscitation room as this consistently delayed drug preparation. Also, prescription and administration guidelines are now available on a tablet in the resuscitation room for ease of access. Conclusions Staff had improved confidence after completing the ‘drug drills’, which is expected to translate into better performance and patient care. We aim to repeat these drills in the future to see if our prescribing and preparation times have improved, and whether we have leant from learning points that were identified from feedback.
  • Targeted learning through paediatric simulation

    Spencer, Emma Elizabeth; Shephert, Jennifer (Archives of Disease in Childhood, 2021)
    Background Simulation is regularly run with the paediatric multi-disciplinary team at a district general hospital. This facilitates learning on an individual and team level, while improving processes of patient care in a safe environment. In this quality improvement project themes were noted in simulation involving paediatric resuscitation, therefore targeted interventions were put in place to make improvements. Objectives Intervention One: Covid-19 has altered healthcare professionals approach to patient contact through the use of personal protective equipment (PPE) to ensure infection control. The Advanced Life Support Group endorsed guidance that in emergencies the patient should be assumed to have Covid-19 and full PPE should be used by responders. In paediatrics breathing support is essential; therefore unplanned simulation was run with staff to practice this skill while maintaining the safe use of PPE. Intervention Two: In simulated cardiac arrest the time taken to administer the first Adrenaline dose was over 13 minutes. Delays in administering Adrenaline in paediatric, in-hospital cardiac arrest with a non-shockable rhythm is associated with decreased survival, ROSC and survival with a favourable neurological outcome. ‘The Arrest to Adrenaline Race’ was launched with the aim to decrease the time taken to administer Adrenaline; so that in a real life scenario the patient would have the best chance of survival. Methods Intervention One: In simulation it took 156 seconds until the patient was first bagged after responders correctly donned PPE, which would have a detrimental impact to successful resuscitation. ‘The Amber Bagging Race’ was launched where teams of healthcare professionals practiced the procedure in a race scenario; from recognition of a deteriorated patient, to the correct use of PPE and then successful bagging. Intervention Two: Healthcare professionals engaged in race scenarios with a manikin, where they timed the process taken from recognition of an arrested patient, initiating resuscitation, obtaining interosseous access and administering Adrenaline at the correct prescribed dose for weight. Results Intervention One: Over two weeks thirteen teams participated and the average time to bag was reduced to 56 seconds in week one and 41 seconds in week two. In a second unplanned paediatric resuscitation following ‘The Amber Bagging Race’ the time taken to bag the patient was 46 seconds; a significant improvement in clinical practice. Intervention Two: Over two weeks fourteen teams participated and the average time taken to administer Adrenaline reduced to 324 seconds in week one and 138 seconds in week two. In further simulation scenarios following ‘The Arrest to Adrenaline Race’ the time taken to administer Adrenaline averaged 5 minutes and 23 seconds. Conclusions Conclusion: Simulation identified key areas for improvement in paediatric resuscitation and targeted interventions enabled specific practice of skills, with the aim to improve patient care in a real life scenario. Learning was disseminated to the wider team and processes were altered to further improvements in patient safety. The races brought an atmosphere of fun to the ward, improving engagement and morale. People are often fearful of simulation; an environment of fun rather than fear is conducive to more effective learning.
  • Worldwide differences in childhood type 1 diabetes: The SWEET experience

    Ngwu, Ursula
    Objective To study worldwide differences in childhood diabetes, comparing relevant indicators among five regions within the SWEET initiative. Subjects We investigated 26 726 individuals with type 1 diabetes (T1D) from 54 centers in the European region; 7768 individuals from 30 centers in the Asia/Middle East/Africa region; 2642 people from five centers in Australia/New Zealand; 10 839 individuals from seven centers in North America, and 1114 patients from five centers in South America. Methods The SWEET database was analyzed based on the following inclusion criteria: T1D, time period 2015-2019, and age < 21 years, with analysis of the most recent documented year of therapy. For the statistical analysis, we used multivariable linear and logistic regression models to adjust for age (<6 years, 6- < 12 years, 12- < 18 years, 18- < 21 years), gender, and duration of diabetes (<2 years, 2- < 5 years, 5- < 10 years, ≥10 years). Results Adjusted HbA1c means ranged from 7.8% (95%-confidence interval: 7.6-8.1) in Europe to 9.5% (9.2-9.8) in Asia/Middle East/Africa. Mean daily insulin dose ranged from 0.8 units/kg in Europe (0.7-0.8) and Australia/New Zealand (0.6-0.9) to 1.0 unit/kg 0.9-1.1) in Asia/Middle East/Africa. Percentage of pump use was highest in North America (80.7% [79.8-81.6]) and lowest in South America (4.2% [3.2-5.6]). Significant differences between the five regions were also observed with regards to body mass index SD scores, frequency of blood glucose monitoring and presence of severe hypoglycaemia. Conclusions We found significant heterogeneity in diabetes care and outcomes across the five regions. The aim of optimal care for each child remains a challenge.
  • Observational Study of Pulse Transit Time in Children With Sleep Disordered Breathing.

    Yanney, Michael P.; Kurc, Miguel; Tilbrook, Sean; Ali, Nabeel (2020-05)
    Background: Pulse transit time (PTT) is a non-invasive measure of arousals and respiratory effort for which we aim to identify threshold values that detect sleep disordered breathing (SDB) in children. We also compare the sensitivity and specificity of oximetry with the findings of a multi-channel study. Methods: We performed a cross-sectional observational study of 521 children with SDB admitted for multi-channel sleep studies (pulse oximetry, ECG, video, sound, movement, PTT) in a secondary care centre. PTT data was available in 368 children. Studies were categorised as normal; primary snoring; upper airway resistance syndrome (UARS); obstructive sleep apnoea (OSA), and "abnormal other." Receiver operator characteristic curves were constructed for different PTT (Respiratory swing; Arousal index) thresholds using a random sample of 50% of children studied (training set); calculated thresholds of interest were validated against the other 50% (test set). Study findings were compared with oximetry categories (normal, inconclusive, abnormal) using data (mean and minimum oxygen saturations; oxygen desaturations > 4%) obtained during the study. Results: Respiratory swing of 17.92 ms identified SDB (OSA/UARS) with sensitivity: 0.80 (C.I. 0.62-0.90) and specificity 0.79 (C.I. 0.49-0.87). PTT arousal index of 16.06/ hour identified SDB (OSA/UARS) with sensitivity: 0.85 (95% C.I. 0.67-0.92) and specificity 0.37 (95% C.I. 0.17-0.48). Oximetry identified SDB (OSA) with sensitivity: 0.38 (C.I. 0.31-0.46) and specificity 0.98 (C.I. 0.97-1.00). Conclusions: PTT is more sensitive but less specific than oximetry at detecting SDB in children. The additional use of video and sound enabled detection of SDB in twice as many children as oximetry alone.
  • Epilepsy deaths in children: Improvements driven by data and surveillance in pediatrics.

    Dunkley, Colin (2019-09)
    Epilepsy-related death in children and young people deserves understanding and intervention along with epilepsy-related deaths in adults. Risk of death from epilepsy varies at different ages, and the specific calculations of risk remains complex and varies between studies. There have been several UK studies examining factors associated with epilepsy-related deaths. A UK national audit with other national initiatives has evidenced improving quality of care and more recently allowed service provision factors associated with reduced epilepsy-related death to be evidenced. A national program of health education, formalized epilepsy networks, commissioned surgical pathways, and patient information resources around risk and participation are examples of quality improvement initiatives. Epilepsy-related death is a key outcome, and there remains many difficulties and opportunities at local, regional, and national level to better understand and improve this outcome for children and young people and the adults that they should become. This paper is for the Special Issue: Prevent 21: SUDEP Summit - Time to Listen.
  • Association of quality of paediatric epilepsy care with mortality and unplanned hospital admissions among children and young people with epilepsy in England: a national longitudinal data linkage study.

    Dunkley, Colin (2019-09)
    Background: Concerns have been raised about variation in care quality and outcomes among children and young people with epilepsies in England. We aimed to investigate the association between quality of paediatric care, hospital admissions, and all-cause deaths among epilepsy patients. Methods: In this longitudinal data linkage study of paediatric epilepsy services in England, we linked unit-level data from round 1 (2009-11) and round 2 (2013-14) of the Epilepsy12 national clinical audit, with death registrations from the UK Office for National Statistics and data for unplanned hospital admissions from Hospital Episode Statistics. We investigated the association between unit-level performance in involving a paediatrician with epilepsy expertise, an epilepsy specialist nurse, and a paediatric neurologist (where appropriate) in round 1 and the proportion of adolescents (aged 10-18 years) with epilepsy admitted to each unit who subsequently died during the study period (April 1, 2009, to March 31, 2015). We also investigated whether change in Epilepsy12 performance between the two audit rounds was associated with changes in the standardised ratio of observed-to-expected unplanned epilepsy admissions over the same period. Findings: In 99 units with data for the analyses relating to paediatricians with epilepsy expertise and epilepsy specialist nurses, 134 (7%) of 1795 patients died during the study period, 88 (5%) of whom died after the transition to adult service. In 55 units with data for the analyses relating to paediatric neurologists, 79 (7%) of 1164 patients died, 54 (5%) of whom did so after the transition. In regression models adjusting for population, unit, and hospital activity characteristics, absolute reductions in total mortality risk (6·4 percentage points, 95% CI 0·1-12·7) and mortality risk after transition (5·7 percentage points, 0·6-10·8) were found when comparing units where all versus no eligible patients were seen by a paediatric neurologist. Units where all eligible patients were seen by a paediatric neurologist were estimated to have absolute reductions of 4·6 percentage points (0·3-8·9) in total mortality and of 4·6 percentage points (1·2-8·0) in post-transition mortality, compared with units where no or some eligible patients were seen by a paediatric neurologist. There was no significant association between performance on being seen by an epilepsy specialist nurse or by a paediatrician with epilepsy expertise and mortality. In units where access to an epilepsy specialist nurse decreased, the standardised ratio of epilepsy admissions increased by a mean of 0·21 (0·01-0·42). Interpretation: Among adolescents with epilepsy, greater involvement of tertiary specialists in paediatric care is associated with decreased all-cause mortality in the period after transition to adult services. Reduced access to an epilepsy specialist nurse was associated with an increase in paediatric epilepsy admissions.
  • Children and Young People-Mental Health Safety Assessment Tool (CYP-MH SAT) study: Protocol for the development and psychometric evaluation of an assessment tool to identify immediate risk of self-harm and suicide in children and young people (10-19 years) in acute paediatric hospital settings.

    Sherwood Forest Hospitals NHS Foundation Trust; CYP-MH SAT Study Steering Group (2018-04)
    INTRODUCTION: Currently, no standardised, evidence-based assessment tool for assessing immediate self-harm and suicide in acute paediatric inpatient settings exists. AIM: The aim of this study is to develop and test the psychometric properties of an assessment tool that identifies immediate risk of self-harm and suicide in children and young people (10-19 years) in acute paediatric hospital settings. METHODS AND ANALYSIS: Development phase: This phase involved a scoping review of the literature to identify and extract items from previously published suicide and self-harm risk assessment scales. Using a modified electronic Delphi approach, these items will then be rated according to their relevance for assessment of immediate suicide or self-harm risk by expert professionals. Inclusion of items will be determined by 65%-70% consensus between raters. Subsequently, a panel of expert members will convene to determine the face validity, appropriate phrasing, item order and response format for the finalised items.Psychometric testing phase: The finalised items will be tested for validity and reliability through a multicentre, psychometric evaluation. Psychometric testing will be undertaken to determine the following: internal consistency, inter-rater reliability, convergent, divergent validity and concurrent validity. ETHICS AND DISSEMINATION: Ethical approval was provided by the National Health Service East Midlands-Derby Research Ethics Committee (17/EM/0347) and full governance clearance received by the Health Research Authority and local participating sites. Findings from this study will be disseminated to professionals and the public via peer-reviewed journal publications, popular social media and conference presentations.
  • Core Health Outcomes in Childhood Epilepsy (CHOICE): Development of a core outcome set using systematic review methods and a Delphi survey consensus.

    Dunkley, Colin (2019-05)
    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.
  • Safety and effectiveness of hormonal treatment versus hormonal treatment with vigabatrin for infantile spasms (ICISS): a randomised, multicentre, open-label trial.

    Sherwood Forest Hospitals NHS Foundation Trust (2017-01)
    BACKGROUND: Infantile spasms constitutes a severe infantile epilepsy syndrome that is difficult to treat and has a high morbidity. Hormonal therapies or vigabatrin are the most commonly used treatments. We aimed to assess whether combining the treatments would be more effective than hormonal therapy alone. METHODS: In this multicentre, open-label randomised trial, 102 hospitals (Australia [three], Germany [11], New Zealand [two], Switzerland [three], and the UK [83]) enrolled infants who had a clinical diagnosis of infantile spasms and a hypsarrhythmic (or similar) EEG no more than 7 days before enrolment. Participants were randomly assigned (1:1) by a secure website to receive hormonal therapy with vigabatrin or hormonal therapy alone. If parents consented, there was an additional randomisation (1:1) of type of hormonal therapy used (prednisolone or tetracosactide depot). Block randomisation was stratified for hormonal treatment and risk of developmental impairment. Parents and clinicians were not masked to therapy, but investigators assessing electro-clinical outcome were masked to treatment allocation. Minimum doses were prednisolone 10 mg four times a day or intramuscular tetracosactide depot 0.5 mg (40 IU) on alternate days with or without vigabatrin 100 mg/kg per day. The primary outcome was cessation of spasms, which was defined as no witnessed spasms on and between day 14 and day 42 from trial entry, as recorded by parents and carers in a seizure diary. Analysis was by intention to treat. The trial is registered with The International Standard Randomised Controlled Trial Number (ISRCTN), number 54363174, and the European Union Drug Regulating Authorities Clinical Trials (EUDRACT), number 2006-000788-27. FINDINGS: Between March 7, 2007, and May 22, 2014, 766 infants were screened and, of those, 377 were randomly assigned to hormonal therapy with vigabatrin (186) or hormonal therapy alone (191). All 377 infants were assessed for the primary outcome. Between days 14 and 42 inclusive no spasms were witnessed in 133 (72%) of 186 patients on hormonal therapy with vigabatrin compared with 108 (57%) of 191 patients on hormonal therapy alone (difference 15.0%, 95% CI 5.1-24.9, p=0.002). Serious adverse reactions necessitating hospitalisation occurred in 33 infants (16 on hormonal therapy alone and 17 on hormonal therapy with vigabatrin). The most common serious adverse reaction was infection occurring in five infants on hormonal therapy alone and four on hormonal therapy with vigabatrin. There were no deaths attributable to treatment. INTERPRETATION: Hormonal therapy with vigabatrin is significantly more effective at stopping infantile spasms than hormonal therapy alone. The 4 week period of spasm cessation required to achieve a primary clinical response to treatment suggests that the effect seen might be sustained, but this needs to be confirmed at the 18 month follow-up.
  • Living with uncertainty and hope: A qualitative study exploring parents' experiences of living with childhood multiple sclerosis.

    Sherwood Forest Hospitals NHS Foundation Trust (2017-06)
    Background There is growing recognition that multiple sclerosis is a possible, albeit uncommon, diagnosis in childhood. However, very little is known about the experiences of families living with childhood multiple sclerosis and this is the first study to explore this in depth. Objective Our objective was to explore the experiences of parents of children with multiple sclerosis. Methods Qualitative in-depth interviews with 31 parents using a grounded theory approach were conducted. Parents were sampled and recruited via health service and voluntary sector organisations in the United Kingdom. Results Parents' accounts of life with childhood multiple sclerosis were dominated by feelings of uncertainty associated with four sources; diagnostic uncertainty, daily uncertainty, interaction uncertainty and future uncertainty. Parents attempted to manage these uncertainties using specific strategies, which could in turn create further uncertainties about their child's illness. However, over time, ongoing uncertainty appeared to give parents hope for their child's future with multiple sclerosis. Conclusion Illness-related uncertainties appear to play a role in generating hope among parents of a child with multiple sclerosis. However, this may lead parents to avoid sources of information and support that threatens their fragile optimism. Professionals need to be sensitive to the role hope plays in supporting parental coping with childhood multiple sclerosis.
  • Drooling Reduction Intervention randomised trial (DRI): comparing the efficacy and acceptability of hyoscine patches and glycopyrronium liquid on drooling in children with neurodisability.

    Sherwood Forest Hospitals NHS Foundation Trust (2018-04)
    OBJECTIVE: Investigate whether hyoscine patch or glycopyrronium liquid is more effective and acceptable to treat drooling in children with neurodisability. DESIGN: Multicentre, single-blind, randomised controlled trial. SETTING: Recruitment through neurodisability teams; treatment by parents. PARTICIPANTS: Ninety children with neurodisability who had never received medication for drooling (55 boys, 35 girls; median age 4 years). EXCLUSION CRITERIA: medication contraindicated; in a trial that could affect drooling or management. INTERVENTION: Children were randomised to receive a hyoscine skin patch or glycopyrronium liquid. Dose was increased over 4 weeks to achieve optimum symptom control with minimal side-effects; steady dose then continued to 12 weeks. PRIMARY AND SECONDARY OUTCOMES: Primary outcome: Drooling Impact Scale (DIS) score at week-4. SECONDARY OUTCOMES: change in DIS scores over 12 weeks, Drooling Severity and Frequency Scale and Treatment Satisfaction Questionnaire for Medication; adverse events; children's perception about treatment. RESULTS: Both medications yielded clinically and statistically significant reductions in mean DIS at week-4 (25.0 (SD 22.2) for hyoscine and 26.6 (SD 16) for glycopyrronium). There was no significant difference in change in DIS scores between treatment groups. By week-12, 26/47 (55%) children starting treatment were receiving hyoscine compared with 31/38 (82%) on glycopyrronium. There was a 42% increased chance of being on treatment at week-12 for children randomised to glycopyrronium relative to hyoscine (1.42, 95% CI 1.04 to 1.95). CONCLUSIONS: Hyoscine and glycopyrronium are clinically effective in treating drooling in children with neurodisability. Hyoscine produced more problematic side effects leading to a greater chance of treatment cessation.
  • Parents' and carers' experiences of transition and aftercare following a child's discharge from a paediatric intensive care unit to an in-patient ward setting: A qualitative systematic review.

    Suleman, Zainab (2018-11-16)
    OBJECTIVES: To explore parents' experiences of transition and aftercare following their child's discharge from a paediatric intensive care unit to an in-patient ward. METHODS: A qualitative systematic review was conducted. Electronic databases CINAHL, MEDLINE, EMBASE, Psych INFO, and ASSIA were searched for qualitative studies with no date limits imposed. Methodological quality was assessed using the JBI QARI standardised critical appraisal instrument. Data were extracted into a standardised data extraction tool. Findings were pooled using a meta-aggregative approach. RESULTS: Four studies were included in the final review that included a total of 95 participants. Forty-nine findings were extracted and through an iterative process resulting in four synthesised findings being developed. These included: (1) Dynamic emotional response pre, peri and post-transfer; (2) Involvement in care absent but fundamental to functioning; (3) Changes in care delivery and environment provoking adverse emotions and (4) Transition as a physical, emotional and social balancing act. CONCLUSION: Transitioning from the paediatric intensive care unit to an in-patient ward can be a challenging time for parents, exposing them to a turbulent emotional and social status, and depleting their personal resources. Parents are aware of differences in the organisation and delivery of care between clinical areas which can compound the adversity experienced. Health professionals need to provide targeted support in order to mitigate these negative emotional, physical and social effects experienced.
  • ISPAD Annual Conference 2017 Highlights.

    Ngwu, Ursula (2018-08)
    The article focuses on International Society for Pediatric and Adolescent Diabetes's 2018 conference. Topics discussed include role of good glycemic control in treating pediatric diabetes; sustained proliferation and expansion of beta cells for future therapeutic use; and challenges surrounding type 1 diabetes control.

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