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.
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 help influence national policies.
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.
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.
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