Royal College of Paediatrics and Child Health British Paediatric Surveillance Unit 14th Annual Report 1999/2000 The British Paediatric Surveillance Unit always welcomes invitations to give talks describing the work of the Unit and makes every effort to respond to these positively. Enquiries should be directed to our office. The Unit positively encourages recipients to copy and circulate this report to colleagues, junior staff and medical students. Additional copies are available from our office, to which any enquiries should be addressed. Published September 2000 by the: British Paediatric Surveillance Unit A unit within the Research Division of the Royal College of Paediatrics and Child Health 50 Hallam Street London W1W 6DE Telephone: 44 (0) 20 7307 5680 Facsimile: 44 (0) 20 7307 5690 E-mail: [email protected] Registered Charity No. 1057744 ISBN 1 900954 48 6 © British Paediatric Surveillance Unit British Paediatric Surveillance Unit - 14 Annual Report 1999-2000 Compiled and edited by Richard Lynn, Angus Nicoll, Jugnoo Rahi and Chris Verity Membership of Executive Committee 1999/2000 Dr Christopher Verity Chairman Dr Angus Clarke Co-opted Professor Richard Cooke Royal College of Paediatrics and Child Health Research Division Dr Patricia Hamilton Co-opted Professor Peter Kearney Faculty of Paediatrics, Royal College of Physicians of Ireland Dr Jugnoo Rahi Medical Adviser Dr Ian Jones Scottish Centre for Infection and Environmental Health Dr Christopher Kelnar Co-opted Dr Gabrielle Laing Co-opted Mr Richard Lynn Scientific Co-ordinator Dr Angus Nicoll Medical Adviser Professor Catherine Peckham Institute of Child Health (London) Mrs Linda Haines Royal College of Paediatrics and Child Health Research Division Professor Colin Roberts Public Health Laboratory Service (retired March 2000) Professor Euan Ross Royal College of Paediatrics and Child Health Professor Brent Taylor Co-opted Dr Roderick McFaul Department of Health (observer) i Contents Membership of Executive 5 Surveillance studies undertaken in 1999 Committee 1999-2000 i Conditions included in the scheme 13 Congenital brachial palsy 13 Congenital rubella 16 Encephalitis in children two months to three years 17 Fatal/severe allergic reaction to food ingestion 19 Foreword 1 Haemolytic uraemic syndrome 21 by Dr Christopher Verity, HIV and AIDS infection in childhood 23 Chairman of the BPSU Executive Committee Inflammatory bowel disease in under 20 year olds 25 Invasive Haemophilus influenzae infection 27 Progressive intellectual and neurological deterioration 29 Reye's syndrome 31 1 Introduction Severe visual impairment and blindness 34 Aims of the BPSU 4 Subacute sclerosing panencephalitis 35 Key challenges 1996-2000 4 Subdural haematoma/effusion 36 6 New studies for 2000 2 How the surveillance Group B streptococcus disease 38 system works Cerebrovascular disease, stroke and stroke-like illness 39 Selection of studies for inclusion in the scheme 5 The reporting system 5 Follow-up and confirmation of case reports 7 7 RCPCH/RCPE Joint Symposium - Difficulties in case reporting 7 Key Issues in Child Health 41 The use of complementary data sources 8 Funding 8 8 The international perspective 42 3 Surveillance activities in 1999 Participation in the scheme 9 Workload of those participating 10 Appendices Appendix A Completed studies 48 Appendix B Published papers 50 Appendix C Recent presentations 51 4 Main findings of studies Appendix D Support groups & contacts 52 undertaken in 1999 12 Appendix E Contact addresses 53 ii Foreword Confidence and confidentiality Since it was founded almost 15 years ago the BPSU has depended There is a need to maintain high standards of patient confidentiality completely on the active involvement of paediatricians. The in an atmosphere of increasing public and professional concern surveillance system is based on the orange card which is posted to about the issue. In the light of the Data Protection Act 1998, the over 2000 consultant paediatricians in the UK and the Republic of Common Law duty of confidence, the new Human Rights Act and Ireland. Every month the card arrives in the in-tray and each some GMC guidance it has been suggested that doctors should paediatrician makes a decision – do I bother to complete it or do always obtain explicit patient or parental consent before sharing I throw it in the bin? Fortunately in over 90% of cases the decision with other professionals identifiable data required for public health is made to complete the card and return it to the BPSU office. It surveillance. On the same basis it has been suggested that surveillance is important for the viability of the system that paediatricians are data should be totally anonymised if it is impractical to obtain not overloaded with BPSU requests. For practical reasons the explicit consent. conditions under surveillance have to be relatively rare and only about 25% of paediatricians report cases each year. On most The BPSU Executive Committee is concerned that if some of the occasions all the paediatrician has to do is tick the “nothing to guidance on patient confidentiality was interpreted in the strictest report” box. This “negative” feed-back is very important because sense it would seriously prejudice or completely inhibit surveillance it enables Richard Lynn, the Scientific Co-ordinator, to keep track that requires complete ascertainment and relies on data linkage. of response rates and investigate the reasons that cards fail to Key information required to protect the health of children would return. It also helps us to estimate the extent to which there is not be obtained in the future. The implications would be similar under-reporting of cases. for public health activities such as the management of public health emergencies and surveillance for infectious diseases via The conditions on the surveillance card must be sufficiently clinician and laboratory reporting. Bodies such as the Public important for paediatricians to want to make the effort. When a Health Laboratory Service (PHLS) might be unable to fulfil some paediatrician has seen a child with a condition under surveillance, of their responsibilities. ticking the appropriate box on the orange card results in a request for further information, usually in the form of a questionnaire to It is important to draw attention to the difference between complete. In itself this hardly an incentive to report cases! The epidemiological surveillance and interventional research. The effort involved in completing the questionnaire is not directly to surveillance groups that work via the BPSU collect data about the advantage of either the doctor or the patient. It must be clear children which they are required to keep in confidence. They do that each surveillance project is likely to yield information that will not become involved in patient management and they do not make be beneficial to children in general. Studies should attempt to contact with the children or their relatives. In this way BPSU answer a scientific question and should be important for public or surveillance is analogous to the surveillance for infectious diseases child health. The BPSU Executive Committee tries to ensure that carried out by the PHLS and its Communicable Disease Surveillance proposals that are accepted for the orange card meet these criteria Centre. Authoritative guidance on this important area of and that questionnaires are well designed - and as brief as possible! epidemiological surveillance is not yet available, although it is The Executive Committee also has an important role in ensuring recognised that special considerations apply to public health that BPSU surveys are efficiently organised and properly monitored. surveillance. A National Advisory Body for Confidentiality and Security is being set up and it will be important to ensure that the There has been careful examination of the protocols of many BPSU BPSU and the PHLS inform this body about the particular nature surveys over the years to ensure that they conform to accepted of epidemiological surveillance. ethical standards for surveillance studies. Since it was established in 1986, over forty investigations of important paediatric conditions The BPSU Executive Committee has recently discussed the issues have been completed through the BPSU. The findings have been associated with patient confidentiality and has taken action, indeed published in over 100 papers and reports which have protected and it has taken a national lead. A report has been sent by the BPSU promoted the health of children. It has been part of the work of the Executive Committee to the Executive Committee of our College BPSU to ensure that investigators are aware of the need to maintain and to the Deputy Chief Medical Officer at the Department of the confidentiality of the data that are entrusted to them. Surveillance Health. Meanwhile in line with the Caldicott report1 the BPSU is groups have been required to obtain ethical consent for their ensuring that investigators ask for the minimum amount of data studies and this has provided a considerable precedent when about the children in their surveys. The aim is to maintain the considering the ethics of BPSU work in the future. anonymity of the patients without prejudicing the studies. To the 1 ensure good surveillance there is a need to have sufficient with a number of patient and carer organisations and will develop information about individuals to validate results and identify these contacts further in order to publicise the work of the BPSU duplicate reports. as widely as possible. The issue of obtaining prior parental consent before sharing Paediatricians worldwide have shown their confidence in the information is difficult. The College Research Unit found that method of surveillance pioneered by the BPSU. This was evident when prior parental consent was required for a study the data at the second meeting of the International Network of Paediatric collection process was considerably delayed. After a year of Surveillance Units (INoPSU) in Ottawa this June. Dr Angus reminders parental consent had been obtained via paediatricians Nicoll and I attended on behalf of the BPSU and would like to in only 46% of cases.