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Proceedings of Workshop on Reye's Syndrome and Reye-Like Inherited Metabolic Disorders

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Proceedings of Workshop on Reye's Syndrome and Reye-Like Inherited Metabolic Disorders WORKSHOP ON REYE'S SYNDROME AND REYE-LIKE INHERITED METABOLIC DISORDERS DONCASTER MARCH 14-15, 2002 A REPORT BASED ON SUBMITTED PAPERS AND A TRANSCRIPT OF THE PROCEEDINGS THE WORKSHOP WAS FUNDED BY THE NATIONAL REYE'S SYNDROME FOUNDATION OF THE UK. REPORT EDITOR: DR SUSAN HALL, MSc, FFPHM, FRCPCH, FRCP 1 INDEX OF CONTENTS OF PROCEEDINGS PREFACE AND DEDICATION INTRODUCTORY SECTION iList of participants iBackground: Why the need for this Workshop? iList of Workshop questions iIntroduction by Mr Gordon Denney, Honorary Administrator, - National Reye’s Syndrome Foundation of the UK - PART 1 iWhat is the evidence that we have a problem? iWhat is its nature and magnitude? Is it preventable by early diagnosis and appropriate management? - COVERS INTRODUCTION AND CASE PRESENTATION BY DR SUE HALL AND WORKSHOP QUESTIONS (see introductory section) 1.1 TO 1.3.2. PART 2 i Assuming that there is a problem and that early diagnosis of Reye’s syndrome and Reye-like inherited metabolic disorders would contribute to a reduction in early childhood morbidity and mortality and in parental distress, how can this be achieved? - COVERS WORKSHOP QUESTIONS 2.1 TO 2.3 PART 3 i Laboratory and pathological diagnosis: Investigations (Best practice –ideal world – no resource constraints) - COVERS WORKSHOP QUESTIONS 3.1 TO 3.5 2 PART 4 i Management of Reye’s syndrome and “Reye-like” encephalopathy: “best” (ideal world, no resource constraints) practice. - COVERS WORKSHOP QUESTIONS 4.1 TO 4.5 PART 5 iDiagnosis at autopsy - COVERS WORKSHOP QUESTIONS 5.1-5.7 PART 6 iObstacles to achieving “best” practice: why have we got a problem? - COVERS WORKSHOP QUESTIONS 6.1 – 6.2.4 PART 7 iDissemination and implementation of the educational package - COVERS WORKSHOP QUESTIONS 7.1 -7.3 PART 8: GLOSSARY OF TERMS PART 9: POWERPOINT PRESENTATIONS iProfessor Stephenson and Dr Lakhanpaul iDr Baumer ******************************* 3 WORKSHOP PROCEEDINGS: PREFACE On behalf of the National Reye’s Syndrome Foundation of the United Kingdom I am delighted that we were able to support this Workshop in full. This was entirely due to the magnificent fundraising efforts of the Foundation’s supporters and the generosity of donors. The meeting represented a milestone in the history of Reye’s syndrome and the Foundation: it was held at a time when, thankfully, the incidence of the “classic” form of the disease had declined dramatically following public warnings about the use of aspirin in children and teenagers. Instead of sitting back on its laurels at this point, the Foundation turned its efforts not only towards maintaining awareness of the warning and of “classic” RS, but also towards tackling the problem of the “Reye- like” inherited metabolic disorders. It was the first time that the Foundation had funded a meeting involving such a wide range of professional disciplines. It was a pleasure to build on our relationships both with CLIMB, the support group for inherited metabolic diseases, and also with the Royal College of Paediatrics and Child Health. The latter had begun when Reye’s syndrome became one of the pioneering conditions to be included in a new national surveillance scheme that ultimately resulted in the highly successful British Paediatric Surveillance Unit, which is part of the College’s Research Division. All aspects of Reye’s syndrome and the Reye-like inherited metabolic disorders were addressed in the Workshop. The submitted papers and transcript of the discussion are contained in these Proceedings, which are hosted on the Foundation’s website so that they are available to parents and professionals alike. The Foundation is most grateful to the Steering Committee who organised the Workshop, the participants who contributed papers and expertise and Mr Carl Clayton for his assistance with the website production. I am also delighted to report that, as a direct result of the meeting, a formal two year Guideline Development project on the diagnosis and management of childhood encephalopathies, including Reye’s syndrome and the Reye-like inherited metabolic disorders, began in November 2003 at the Queens Medical Centre, Nottingham University under the direction of Professor Terence Stephenson. This project has also been funded by the Foundation. Gordon Denney Hon. Administrator, National Reye’s Syndrome Foundation of the UK DEDICATION To all those families who have been directly or indirectly affected by Reye’s syndrome or Reye-like inherited metabolic disorders. WORKSHOP PROCEEDINGS: INTRODUCTORY SECTION *************** LIST OF PARTICIPANTS BACKGROUND: WHY THE NEED FOR THIS WORKSHOP? LIST OF WORKSHOP QUESTIONS INTRODUCTION BY MR GORDON DENNEY REPRESENTING THE NATIONAL REYE’S SYNDROME FOUNDATION OF THE UK 0 PARTICIPANTS Name and designation as at March 2002 Dr Harry Baumer, consultant general paediatrician, Derriford Hospital, Plymouth Professor Jem Berry, emeritus professor of paediatric pathology, Bristol Dr Jim Bonham, consultant biochemist, Sheffield Childrens Hospital Dr Andrew Boon, consultant general paediatrician, Royal Berkshire Hospital, Reading Dr Anupam Chakrapani, *consultant paediatrician, Birmingham Childrens Hospital Dr Mike Champion, *consultant paediatrician London (Guys Hospital) Dr Jane Collins, consultant paediatric neurologist, London (Great Ormond Street Hospital); (Convener, British Inherited Metabolic Disease Group). Dr Neil Dalton, consultant biochemist, London (Guy's Hospital) Mr Gordon Denney, Honorary Administrator of the National Reye's Syndrome Foundation Jane Gick, nurse specialist in inherited metabolic diseases, London (Guy’s Hospital) Dr John Glasgow, consultant paediatrician in Accident and Emergency, with special interest in Reye’s syndrome, Queen’s University, Belfast Dr Anne Green, consultant biochemist, Birmingham Children’s Hospital Mrs Lesley Greene, CLIMB Support Services Director Professor David Hall†, professor of community paediatrics, Dept General Practice, School of Health and Related Research, Sheffield University; President, Royal College of Paediatrics and Child Health Dr Sue Hall, consultant epidemiologist, Dept Child Health, Sheffield Childrens Hospital Dr Fenella Kirkham, senior lecturer in paediatric neurology, London (Institute of Child Health). Professor James Leonard, *professor of paediatric metabolic disease, London (Great Ormond Street Hospital) Dr Roddie MacFaul†, consultant general paediatrician, Pinderfields Hospital, Wakefield Dr Marian Malone, consultant paediatric pathologist, London, (Great Ormond St Hospital) Dr Paul Masters, consultant biochemist, Chesterfield and North Derbyshire Royal Hospital Gill Moss, nurse specialist in inherited metabolic disease, Royal Manchester Childrens Hospital Dr Eileen Naughten, *consultant paediatrician, Childrens Hospital, Dublin 1 Richmal Oates-Whitehead, guideline methodologist, Royal College of Paediatrics and Child Health, London Professor Bernard Portmann, professor of pathology specialising in liver disease, London, (Kings College Hospital) Professor Terence Stephenson, professor of child health, Queen’s Medical Centre, Nottingham Professor Stuart Tanner, professor of child health, paediatric hepatologist, Childrens Hospital, Sheffield Dr Rob Tasker, consultant paediatrician in paediatric intensive care medicine, Addenbrookes Hospital, Cambridge Dr John Walter, *consultant paediatrician, Willink Biochemical Genetics Unit, Royal Manchester Childrens Hospital †Moderators *IMDspecialists 2 1) BACKGROUND (Dr Susan Hall) a) WHY THE NEED FOR THIS WORKSHOP? Epidemiological considerations Reye’s syndrome (RS) is an acute encephalopathy associated with liver dysfunction characterised by elevated hepatic serum transaminases and plasma ammonia without hyperbilirubinaemia. There is also hepatic panlobular microvesicular fatty infiltration. It is now recognised that RS is not a single disease entity, but that it includes a range of disorders divisible into two main groups: (a) “Classic” or “idiopathic” or “North American type” RS, which typically (although not exclusively) occurs in children over 5 years of age and in teenagers. It is usually associated with an influenza or varicella prodrome and with aspirin ingestion in therapeutic dosage; (b) The "Reye-like" inherited metabolic disorders (IMDs), the main categories of which are fat oxidation defects, urea cycle disorders and disorders of amino acid metabolism. They are not found in children with “classic” RS and usually first present in infants and children less than 5 years of age. Classic RS is a condition of substantial public health importance, especially in the setting of influenza epidemics. There are specific preventive interventions: non-use of aspirin in children with feverish illnesses and (in the USA) influenza vaccination for children on long term aspirin therapy. Unlike the Reye-like IMDs, classic RS ideally requires long term epidemiological surveillance to monitor the effectiveness of these interventions and to detect any upsurges which might require further exploration. The British Reye’s Syndrome Surveillance Scheme (BRSSS) was an epidemiological survey of trends in the UK and Ireland, which began in 1981 and ended in 2001. Cases conforming to the standard diagnostic criteria were reported by paediatricians and were also ascertained through death entries. The case definition for reporting stated that the encephalopathy should be “unexplained”, which implies that all known causes of the clinical and pathological cluster of abnormalities should be excluded before making a diagnosis of RS. It was important
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