BackgroundKawasaki disease (KD) is the commonest acquired heart disease in the western world. The incidence is rising in all countries, doubling every 20 years. The last BPSU survey was 25 years ago and we wished to update the data and find if there was a link between phenotype, ethnicity, location, and outcome.MethodsThe survey covered all children in the UK and Ireland who had a new diagnosis of KD between February 2013 and February 2015. Using BPSU ‘orange card’ methodology, patients were registered anonymously by their paediatrician who then completed a study questionnaire. Ethical and national information governance board approval was obtained avoiding need for patient consent.Results600 children with KD were notified, of whom 552 satisfied inclusion criteria, 322 boys and 215 girls (15 unknown), age range 2 months to 15.5 years. 389 had complete, 119 incomplete and 42 atypical disease. In those under 1 year of age, 48% had atypical disease (all with coronary artery changes by definition). 21% had incomplete disease. 355 (68%) were Caucasian, 47 (9%) were black African, 8% Indian Asian, 4% were Chinese/Japanese. One third of children were older than 5 years at presentation. Peak incidence in both years was February-March. 80% were seen by the GP at median (range) 2 (0–27) days from first symptom. Median time from onset to diagnosis was 7 (0–36) days and median time from admission to diagnosis was 1 (0–25) days. 24% of 523 had one or more dilated coronary arteries, the left in 90, the right in 64 and the circumflex in 17. 503/532 received immunoglobulin, 360/389 with complete KD, 42/42 with atypical and 101/119 with incomplete. 472/513 received high dose and 460/495 had low dose aspirin. There were 3 deaths and 49/549 children who survived had sequelae.ConclusionThe population-based data on this rare disease are presented for a 2 year period from the UK. This shows new information on ethnicity, phenotype, management and outcomes. There is a high rate of coronary artery disease suggesting an under-diagnosis or under-treatment of this important condition.
AimsFemale genital mutilation (FGM) is the name given to procedures that involve partial or total removal or other injury to the female genitalia for nonmedical reasons. This study describes the presentation, incidence and clinical management of children with FGM in the UK and Republic of Ireland (ROI).MethodsCases of FGM were reported using the established national British Paediatric Surveillance Unit (BPSU) reporting system. The data period is from November 2015-November 2017 with a 12 month follow up.ResultsThese interim results are from 120 cases reported (November 2015-September 2017). 61 (51%) had confirmed FGM, 18 cases were reported in error or were duplicates, 36 questionnaires were incomplete [5 did not meet case definition]. 48% (n=29) of the 61 confirmed cases were classified as type 2.In over 72% of the 61 cases, the parent disclosed child’s history of FGM. At the time of diagnosis, 80% of children (n=49) were four years or older (11 cases not recorded). Most children were diagnosed between 5 years and 10 years 11 months (n=27) or 11 years and 15 years 11 months (n=20) with 3 cases diagnosed between 0 and 4 years 11 months. In 51% of cases FGM was said to have been performed when the child was between 0 and 3 years (n=31). 93% (n=57) were performed before arrival to the UK.13% (n=8) of children had medical symptoms attributed to FGM, with 7% (n=4) of children identified to have mental health symptoms relating to FGM. No children presented with a history of labiaplasty or genital piercing.ConclusionNumbers reported were lower than expected for UK estimated prevalence with fewer physical and mental health symptoms than anticipated. Further information is needed to determine illegality under UK law. These findings should be used to educate health, social care, police and education on prevention programmes to help influence national policies.
AimsThe surveillance study is one stream of the ADHD in transition between children’s services and adult services (CATCh-Us) study and is run in collaboration with the British Paediatric Surveillance Unit (BPSU) and the Child and Adolescent Psychiatry Surveillance System (CAPSS) across the United Kingdom. It aims to quantify the need for young people with ADHD to transition from children’s to adult services, describe this group of young people, estimate the proportion that successfully transition and describe the proportion experiencing optimal transition.MethodsStarting in November 2015 for 13 months, paediatricians and psychiatrists registered with BPSU/CAPSS (n=4500) reported monthly any patients seen with a diagnosis of ADHD, within 6 months of the age boundary of the service, requiring transition to an adult service to continue their ADHD treatment and supervision. All clinicians reporting a case received a questionnaire to confirm eligibility and to gather further information. A follow up questionnaire was sent nine months after notification of an eligible case to establish the details and outcome of the transition.Results228 eligible cases were reported via BPSU and 138 via CAPSS, with initial questionnaire response rates of 91% and 67% respectively. Follow up questionnaire response rates were 67% and 60% respectively. There were no duplicate cases reported across both systems. Preliminary results indicate poor transition processes with less than 25% of clinicians holding a transition planning meeting, only 25% having a handover period and less than 50% having the referral to an adult service accepted; 50% were referred to a specialist adult ADHD service and 12% to primary care.ConclusionResults indicate that patients requiring transition are not experiencing a smooth or successful process. The effectiveness of using a surveillance study methodology to estimate the incidence of transition is reported, as well as study findings. It is likely that results are an underestimate of the incidence of cases requiring transition to an adult service; it relies on clinicians reporting regularly and accurately, not all clinicians treating ADHD patients are registered with BPSU or CAPSS, and patients can be seen by other professionals not reporting via these systems.Funding acknowledgementThis project was funded by the National Institute for Health Research – Health Services and Delivery Research programme (project ref: 14/21/52)
AimsFemale genital mutilation (FGM) is the name given to procedures that involve partial or total removal or other injury to the female genitalia for nonmedical reasons. This study describes the presentation, incidence and clinical management of children with FGM in the UK and Republic of Ireland (ROI).MethodsCases of FGM were reported using the established national British Paediatric Surveillance Unit (BPSU) reporting system. The data period is from November 2015-November 2017 with a 12 month follow up.ResultsThese interim results are from 120 cases reported (November 2015-September 2017). 61 (51%) had confirmed FGM, 18 cases were reported in error or were duplicates, 36 questionnaires were incomplete [5 did not meet case definition]. 48% (n=29) of the 61 confirmed cases were classified as type 2.In over 72% of the 61 cases, the parent disclosed child’s history of FGM. At the time of diagnosis, 80% of children (n=49) were four years or older (11 cases not recorded). Most children were diagnosed between 5 years and 10 years 11 months (n=27) or 11 years and 15 years 11 months (n=20) with 3 cases diagnosed between 0 and 4 years 11 months. In 51% of cases FGM was said to have been performed when the child was between 0 and 3 years (n=31). 93% (n=57) were performed before arrival to the UK.13% (n=8) of children had medical symptoms attributed to FGM, with 7% (n=4) of children identified to have mental health symptoms relating to FGM. No children presented with a history of labiaplasty or genital piercing.ConclusionNumbers reported were lower than expected for UK estimated prevalence with fewer physical and mental health symptoms than anticipated. Further information is needed to determine illegality under UK law. These findings should be used to educate health, social care, police and education on prevention programmes to influence national policies.FundingDepartment of Health England.
Results 192/196 paediatric services enrolled. 186 units provided service descriptor data, 174 clinical audit data and 145 PREM data. The clinical cohort consisted of 3449 patients; median age 5.2 years; male: female 55:45%. Anonymised PREM data were received from 2335 parents, carers, children and young people. 45% of first assessments occurred within an acute presentation. 35% of children had epilepsy diagnosed by 12 months. 22.6% of children had a documented neurodisability.68% of paediatric services now have at least one Epilepsy Specialist Nurse (ESN). There has been a significant increase in percentage of children having ESN input; access to a paediatrician with expertise in epilepsies; appropriate assessment, classification and investigations in 2014 compared to 2012. PREM data showed 88% (1897/2148) overall satisfaction with services; 20% thought that staff are not good at working together. Conclusion There is evidence of significant improvements in the provision of medical and nursing epilepsy care. However, many children still do not receive recommended practice and access fully resourced paediatric epilepsy services.
AimsRickets is a disease of growing children with serious short and long-term complications. Although the prevalence of rickets has been reported widely to be increasing the actual national incidence of nutritional rickets (NR) in the United Kingdom (UK) is unknown. This study aims to describe the incidence, presentation, and clinical management of children with NR in the UK and ROI.MethodsData was collected prospectively monthly between March 2015-March 2017 from 3500 paediatricians using British Paediatric Surveillance Unit reporting methodology with the following definition (table 1):Abstract I16 Table 1 Clinical rickets with any of the following:• Leg deformity/Swollen wrists or knees or ribs AND 250 hour vitamin D<25 nmol/L with one or more abnormalities of serum calcium, alkaline phosphatase, phosphate, parathyroid hormone OR Radiological rickets with:• Widening, cupping, splaying of metaphysis (of any long bone) AND 25OHVitamin D<25 nmol/L Results130 cases met the case definition with an overall annual incidence of 5.04 cases per million children under 16 years.London, East Midlands, West Midlands and Scotland had estimated incidences above the national incidence. Boys (91/130; 70%) were significantly more affected than girls (39/130; 30%) and the majority were of Black (44.6%) and South Asian (36.2%) ethnicity with a median age of 18 months. The commonest clinical presentations were bowed legs, swollen wrists and radiological rickets. Comorbidities included fractures (15/130; 11.5%) hypocalcaemic seizures (11/130; 8.5%;), and dilated cardiomyopathy (4/130; 3%) Two children died of dilated cardiomyopathy from vitamin D deficiency. The commonest associated conditions were cows milk protein allergy (19/51; 19%; ) iron deficiency (8/51; 7%) and eczema (8/51; 7%) At the time of diagnosis 77% of children were not receiving vitamin D supplements. 19 children had rickets despite being reported to be receiving appropriate supplementation. All confirmed radiological cases had either high parathyroid hormone and/or low phosphate. Following diagnosis, most clinicians initially prescribed treatment themselves, with huge variation in duration of prescriptions. In a further 10 cases, rickets was confirmed but excluded in the incidence analysis, for not meeting the case definition (specifically Vitamin D<25 OHnmol/L), suggesting both dietary calcium deficiency and vitamin D insufficiency as role-players in the presentation of NR in the UK.ConclusionsNR continues to affect children in the UK with serious sequelae. Uptake of vitamin D supplementation remains low and constitutes a failure of current public health policy. A UK national policy focusing on vitamin D and calcium supplementation and adherence is required to eliminate this entirely preventable condition.
ObjectiveTo report outcomes from a national cohort of children and young people with type 2 diabetes (T2DM), 1 year post diagnosisResearch design and methods1 year follow up of a cohort of children (<17 years) with T2DM reported through the British Paediatric Surveillance Unit between April 2015 to April 2016. This established an overall UK incidence of 0.72 per 1 00 000 per year (2.92/100,000 in Asians, 1.67/100,000 Black/African/Caribbean/Black British)ResultsNinety-nine (93%) of the 106 notified cases had data available for one-year review. Of these, seven had been lost to follow up and one had the diagnosis revised. The mean age at follow up was 15.3 years. Of those with data, average BMI SDS was 2.72 with a mean increase of 0.14 SDS over a year (92% remained overweight or obese). Only ~15% of cases achieved a reduction in body weight of 5% or more from baseline. Median HbA1c was 53 mmol/mol (range 31–130 mmol/mol) and ~40% attained the UK national target of <48 mmol/mol. HbA1c was associated with BMI SDS change at 1 year (p=0.007) and clinician reported compliance and attendance concerns (p≤0.0001). In over half of cases, clinicians reported issues with compliance and attendance. Mean clinic attendance was 77%. Metformin was the most frequently used agent in management at baseline (77%) and follow up (87%). Microalbuminuria at 1 year was seen in 16.4% of cases compared to 4.2% at baseline.ConclusionsGood compliance and BMI reduction is associated with better outcomes, one year after diagnosis in early onset T2DM. It is concerning that the prevalence of microalbuminuria increases four-fold in this short time frame.
Aims To establish the incidence and clinical associations of acute pancreatitis (AP) in children aged 0-14 years in the UK. Methods Monthly surveillance of new cases of AP in children under 15 years of age through the British Paediatric Surveillance Unit. Results A total of 94 cases (48 boys and 46 girls) of AP, clini-cian-diagnosed from April 2013 to April 2014, fulfilled the diagnostic criteria. The median age of diagnosis was 11.2 years (range 1.30-14.89 years). White children accounted for 60% of cases compared to 40% from ethnic minorities (71% Asian and 13% Black). Pakistani children alone made up 19% of the cohort. The reported incidence of AP in children under age 15 in the UK was 0.78 per 100,000 (95% CI 0.62-0.96). Of the 94 cases: 36 (38%) were idiopathic, drugs 18 (19%), gallstones 12 (13%), hereditary 7 (7.5%), organic acidaemia 7 (7.5%), anatomical anomalies 4 (4%), viral infections 3 (3%), vasculitis 3 (3%), trauma 1 (1%) and others 3 (3%). The most common drug associations were asparaginase (28%), azathioprine (17%) and sodium valproate (17%). Of the 12 gallstone-associated cases, 5 were boys; body weight of 5 cases were above the 91st centile (4 were above the 98th centile). Overall, 6 of 7 organic acidaemia cases (86%) and 3 of 5 asparaginase-associated cases (60%) were of Pakistani ethnicity. Conclusion This is the first estimate of incidence of AP in children in the UK. In children, AP is associated with a wide variety of potential aetiologies and more than one third of cases have no cause identified. The associations of AP have changed significantly since the 1970/80s. Drug therapy and gallstones are now the commonest associations, whilst trauma and mumps have become uncommon. Children from some ethnic minorities are greatly over-represented, which possibly reflect the greater frequency of inborn errors of metabolism in some ethnicities. However the over-representation of asparaginase associated AP in Pakistani children merits further investigation. Aim To use prospectively collected data to investigate the outcomes up to 16 years of TBI in childhood. Methods Data from the Avon Longitudinal Study of Parents and Children (ALSPAC) were analysed. Background demo-graphics and developmental and behavioural profile of the children were derived from questionnaires completed by the mother in pregnancy, at 6 weeks and at 18 and 42 months. Injury data were derived from questionnaires completed by the child's carer at 4½ 5½ 6½ 8 ½ and 11½ years of age. Outcomes were collected when the child was 11-16 years old, from ALSPAC questionnaires and research clinics, and from linked educational data. TBI cases (n = 410), defined as any head injury resulting in loss of consciousness and/or a skull fracture before the age of 11, were compared with children of the same age (n = 1819) who suffered traumatic orthopaedic injuries (fractures-excluding skull fractures). Controls (n = 8770) were all children with available injury data who did not have a TBI or orthopaedic injury. Results 410 ALSPAC participants (59% ma...
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