Child Health Reviews - UK Clinical Outcome Review Programme Overview of Child Deaths in the Four UK Countries

Child Health Reviews - UK Clinical Outcome Review Programme Overview of child deaths in the four UK countries Report September 2013 Commissioned by the Healthcare Quality Improvement Partnership Overview of child deaths in the four UK countries Report September 2013 Report produced by the Royal College of Paediatrics and Child Health CHR-UK Programme of Work at the MRC Centre of Epidemiology for Child Health, University College London Institute of Child Health Report prepared by Pia Hardelid, Research Associate in Statistics Nirupa Dattani, Senior Data Coordinator Jonathan Davey, Data Manager Ivana Pribramska, Information Officer Ruth Gilbert, Professor of Clinical Epidemiology Acknowledgements RCPCH Programme Board: Neena Modi, Jennifer J Kurinczuk, Alan McMahon, *#!(ƫ ++.!ČƫJohn Thain, Jyotsna Vohra. We also acknowledge Laura Gibbon of the Royal College of Paediatrics and Child Health for managing the subcontract for the study. Child Death Overview Working Group: Rachel Knowles (UCL Institute of Child Health), Alison Macfarlane (City University), Berit Müller-Pebody (Public Health England), Roger Parslow (University of Leeds), Sonia Saxena (Imperial College), Anjali Shah (University of Oxford), Peter Sidebotham (University of Warwick) and Charles Stiller (University of Oxford). Additional input given by: Arturo Gonzalez-Izquierdo, Anna Pearce, and a clinician panel for chronic disease codes: Andrew McArdle, Quen Mok, Katja Doerholt, and Mike Sharland. Staff contributing on behalf of the data providers: ONS: Sue Dewane, Lois Cook, Joanne Copsey, Ruth Edwards, Liam Beardsmore, Vera Ruddock, Joanne Evans, Tony Hitching; HSCIC: Susan Milner, Gareth Dunning, Nicola Bootland, Richard Webster, Xanthe Hannah, Stephen Cowley; NISRA: Naomi O’Neill, Karen McConnell; ISD Scotland: Michael Fleming, Lynsey Waugh, Kirsten Monteath; NHS Wales IS: Russell Brown, Gareth Jones. The study benefitted from infrastructure and academic support at the MRC Centre of Epidemiology for Child Health and the Farr Institute of Health Informatics Research - London. CHR-UK was commissioned by the Healthcare Quality Improvement Partnership (HQIP) on behalf of NHS England, NHS Wales, the Health and Social care division of the Scottish government, The Northern Ireland Department of Health, Social Services and Public Safety (DHSSPS) the States of Jersey, Guernsey, and the Isle of Man. iii Foreword I have been privileged to Chair the Royal College of Paediatrics and Child Health programme, Child Health Reviews - UK. The Programme has been innovative and bold, involving the work of an academic group in Module A, presented here, and contributions from paediatrician members of the Royal College of Paediatrics and Child Health throughout the four countries of the UK in Module B, presented in an accompanying report. The aims of Module A were to examine the utility of existing datasets, the value of analyses based on linkages between death certificates and a child’s whole history of hospitalisations and birth registration, to describe variation between UK countries and over time in children’s mortality rates, and to build a picture of the underlying causes of death and accompanying co-morbidities. The Module A team at University College London found that all-cause child mortality has declined in all age groups and UK countries since 1980. Injury is the most frequent underlying cause of death, accounting for around a third to just under a half of deaths in children aged one to 18 years. England appears to have had consistently lower death rates from injury than the other UK countries and this disparity has widened since 1980 for children aged 10 to 18 years. They estimate that 52 fewer deaths among children in this age group would be likely each year if all UK countries had the same mortality rate due to injury as England. Despite a decline in child mortality due to unintentional injuries, there has been no decline in deaths due to self-harm, assault or other undetermined intentional injuries in 10 to 18 year olds in any UK country. These findings require careful consideration by policy makers. The University College London team identify the strengths and limitations of their approach, and suggest ways to improve access to data collections in the future. UK countries differ in data availability, the processes and time required, and the costs of accessing data. These differences limit cross-country UK comparisons that could inform policy and practice. The Royal College of Paediatrics and Child Health has pioneered the use of high quality extractions from patient management systems and electronic records in the National Neonatal Audit Programme, thus avoiding the burden of duplicate data collection by clinical and administrative teams, and reducing the costs and complexity of data associated with the use of data collections. Together with Child Health Reviews - UK, these programmes by the Royal College of Paediatrics and Child Health have advanced the use of electronic data to inform and advance children’s healthcare, with the ultimate aim of improving their life-long health and wellbeing. Professor Neena Modi Vice-President, Science and Research, Royal College of Paediatrics and Child Health iv Contents List of figures and List of tables 4 List of abbreviations 7 Age group definitions 7 Executive summary 8 1 Purpose of the report 12 1.1 Background to the report 12 1.2 Informing policy 12 1.3 How useful are routine data about children who die? 12 1.4 Overview of the report 13 2 Data sources 15 2.1 Background and rationale 15 2.2 Methods 15 2.3 Results 16 2.3.1 Datasets 16 2.3.2 Obtaining the data 16 2.3.3 Data preparation 18 2.4 Discussion 19 2.4.1 Obtaining the data 19 2.4.2 Data preparation 20 2.4.3 Analyses 20 3 Variation in rates of child death due to injury based on the underlying cause recorded on death certificates (1980-2010) 21 3.1 Background and rationale 21 3.2 Methods 22 3.3 Results 23 3.3.1 Trends in all underlying causes of death 23 3.3.2 Trends in injury deaths 25 3.3.3 Type of injury accounting for the decline 27 3.4 Discussion 29 4 Multiple morbidity recorded on children’s death certificates (2006-2010) 30 4.1 Background and rationale 30 4.2 Methods 30 4.3 Results 31 4.4 Discussion 36 5 Variation in child mortality by birth weight and maternal age (1993-2010) 37 5.1 Background and rationale 37 5.2 Methods 38 5.2.1 Birth cohort linked to death records 38 5.2.2 Denominator data 38 5.2.3 Statistical analyses 39 5.3 Results 39 5.3.1 Birth weight 40 5.3.2 Maternal age 42 1 5.3.3 Disparities in child mortality associated with maternal age after accounting for low birth weight 44 5.4 Discussion 49 6 Children who died with a chronic condition (2001-2010) 51 6.1 Background 51 6.2 Methods 52 6.2.1 Study population 52 6.2.2 Identifying children with chronic conditions 53 6.2.3 Injury deaths 54 6.3 Results 54 6.3.1 Previous hospital admission in children who died 54 6.3.2 The value of adding more data from children’s linked hospital trajectory 56 6.3.3 Proportion of children affected by a chronic condition 62 6.3.4 Trends over time in the proportion of children who died with a chronic condition 65 6.3.5 Chronic conditions in children who died of injury 69 6.4 Discussion 71 6.4.1 Proportion of children who died with a chronic condition 71 6.4.2 Injuries as a cause of death in children who died with chronic conditions 71 6.4.3 Maximising the added value of linked data from children’s hospital trajectory 72 7 Place of death in children (2001-2010) 73 7.1 Background 73 7.2 Methods 74 7.2.1 Study population 74 7.2.2 Defining place of death 74 7.3 Results 75 7.3.1 Distribution of deaths in and out of hospital according to admission status 75 7.3.2 Deaths in hospital and admission status 77 7.3.3 Deaths in hospital but not during admission 78 7.3.4 Deaths out of hospital 80 7.3.5 Trends over time in the proportion of deaths occurring in and out of hospital 82 7.4 Discussion 86 8 Future directions 87 References 90 Appendix 3.1 Data cleaning and exclusions for death certificate data for deaths that occurred in 1980 and 2010 in children aged one to 18 years 97 Appendix 3.2A Injury mortality rates, rate ratios and rate differences (per 100,000 population) comparing Scotland, Wales and Northern Ireland with England, by age group and time period: boys 98 Appendix 3.2B Injury mortality rates, rate ratios and rate differences (per 100,000 population) comparing Scotland, Wales and Northern Ireland with England, by age group and time period: girls 99 Appendix 3.3 Information on death registration data used in analyses 100 2 Appendix 3.4 Information on codes used for ICD-9 and ICD-10 chapter groupings based on death certificate data 101 Appendix 3.5 Information on sources for population denominator estimates by country 102 Appendix 3.6A Transport accident mortality rates (per 100,000 population) with 95% CI by country, age group and time period 103 Appendix 3.6B Mortality rates for other unintentional injuries (not transport accidents; per 100,000 population) with 95% CI by country, age group and time period 104 Appendix 3.6C Mortality rates for intentional injuries (per 100,000 population) with 95% CI by country, age group and time period 105 Appendix 4.1 Medical certificate of cause of death 106 Appendix 4.2 ICD-10 code lists for acute respiratory conditions 107 Appendix 5.1 Information on birth registrations linked to death certificate and live birth denominator data for singleton live births, England and Wales, and Scotland 108 Appendix 5.2 Details of data cleaning and statistical methods

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