Mortality Statistics SEPHIG – 16/09/2015 Claudia Wells Head of Mortality Analysis Office for National Statistics

Impact on Mortality Statistics IRIS for cause of death coding Death certification reform

What is IRIS?

Software used to code cause of death to a package called IRIS (version 2013). The development of IRIS was supported by Eurostat (the statistical office of the European Union) and managed by the IRIS Institute hosted by the German Institute of Medical Documentation and Information in Cologne. Provide a common mortality coding system that can be used for coding death certificates, written in any language, according to ICD mortality coding rules and instructions. The use of the IRIS software will help to improve the international comparability of mortality statistics. Currently IRIS uses components of the NCHS Mortality Medical Data System (MMDS) to code the causes of death

Main changes introduced with IRIS IRIS includes major updates to the ICD-10 approved by WHO - including significant changes to the use of codes within the neoplasms chapter. Control of the English IRIS data dictionary Changes to the way drug mentions are coded For stillbirths and neonatal deaths, any maternal condition mentioned on the death certificate will be coded to chapter XVI (certain conditions originating in the perinatal period).

Dual coding 2012 registrations, (excluding neonates) Records were selected from each quarter to avoid seasonal influences Weeks around public holidays were excluded 38,718 records (7.8 per cent) selected for dual coding

Percentage changes by ICD Chapter

Chest Infections v2010: J98 Other respiratory disorders IRIS: J22 Unspecified lower respiratory infection Respiratory disease Mental and behaviour disorders 2.5% 7.0%

Dementia Chest Infections Aspiration pneumonia 7.1% increase in allocation to underlying cause of death

Other significant changes Certain infectious and parasitic diseases Up 4.9 % Movement of deaths involving sepsis/septicaemia

Other significant changes Endocrine, nutritional and metabolic diseases increased by 5.7% Diabetes increased by 6.8%

Where to get more information Statistical Bulletin and underlying data: icd-10-cause-of-death-coding-on-mortality-statistics/england-and-wales/index.html Information Note: of-death-coding-in-England-and-Wales/index.html

What about stillbirths and neonatal deaths An English dictionary of terms specifically for stillbirths and neonatal deaths Automatic coding using the same system as deaths >28days Requires a change in coding for stillbirths and neonatal deaths Assigns an underlying cause of death

Neonatal and stillbirth death certificate Duration a.Main diseases or conditions in infant/fetus b.Other diseases or conditions in infant/fetus c.Main maternal diseases or conditions affecting infant/ fetus d.Other maternal diseases or conditions affecting infant/ fetus e.Other relevant causes

Example of current coding Duration a. Main diseases or conditions in infant/fetus Necrotising Enterocolitis – P77 b. Other diseases or conditions in infant/fetus Preterm 28 weeks gestation– P073 c. Main maternal diseases or conditions affecting infant/ fetus Maternal HIV infection – B24 d.Other maternal diseases or conditions affecting infant/ fetus Maternal Hepatitis B Infection – O984 e.Other relevant causes

ONS hierarchical cause groups Neonatal Classification Before the onset of labour 1 Congenital anomalies 2 Antepartum infections 3 Immaturity related conditions In or shortly after labour 4 Asphyxia, anoxia, or trauma Postnatal 5 External conditions 6 Infections 7 Other specific conditions 9 Sudden infant deaths Unclassified 0 Other conditions Stillbirth Classification Before the onset of labour 1 Congenital anomalies 2 Antepartum infections 3 Immaturity related conditions In or shortly after labour 4 Asphyxia, anoxia, or trauma 5 External conditions 6 Infections 7 Other specific conditions Unclassified 8a Asphyxia, anoxia, or trauma (antepartum) 8b Remaining antepartum 0 Other Conditions

Example of current coding a.Necrotising Enterocolitis – P77 b.Preterm 28 weeks gestation– P073 c. Maternal HIV infection – B24 d.Maternal Hepatitis B Infection – O984 ONS cause groups 1 Congenital anomalies - No mention 2 Antepartum infections - No mention (as the infections are maternal) 3 Immaturity related conditions - P77 and P073

Analysis of IRIS coded data Developing English language dictionary Events that occurred in Neonatal deaths, 3712 Stillbirths 1.ONS cause group based on IRIS coded mentions 2.ONS cause group based on IRIS coded underlying cause of death

ONS cause group based on IRIS coded mentions – Neonatal Deaths ONSIRISDifference% Difference 1. Congenital anomalies Antepartum infections Immaturity related conditions Asphyxia, anoxia or trauma External Conditions Infections Other specific Sudden Infant Death Other

IRIS mentions Vs. ONS mentions – Neonatal Deaths

Example 1 - Neonatal ONS codes Duration a. Main diseases or conditions in infant/fetus Neonatal Sepsis – P369 b. Other diseases or conditions in infant/fetus Extreme Prematurity – P072 c. Main maternal diseases or conditions affecting infant/ fetus Chorioamnionitis – O411 ONS cause groups 1 Congenital anomalies - No mention 2 Antepartum infections - No mention (as infections maternal and neonatal) 3 Immaturity related conditions - P072

Example 1 - Neonatal IRIS codes Duration a. Main diseases or conditions in infant/fetus Neonatal Sepsis – P369 b. Other diseases or conditions in infant/fetus Extreme Prematurity – P072 c. Main maternal diseases or conditions affecting infant/ fetus Chorioamnionitis – P027 ONS cause groups 1 Congenital anomalies - No mention 2 Antepartum infections - P027

Example 2 - Neonatal ONS codes a.Necrotising Enterocolitis – P77 b.Preterm 28 weeks gestation– P073 c. Maternal HIV infection – B24 d.Maternal Hepatitis B Infection – O984 ONS cause groups 1 Congenital anomalies - No mention 2 Antepartum infections - No mention (as infections is maternal) 3 Immaturity related conditions - P77 and P073

Example 2 - Neonatal IRIS codes a. Necrotising Enterocolitis – P77 b.Preterm 28 weeks gestation– P073 c. Maternal HIV infection – P002 d.Maternal Hepatitis B Infection – P002 ONS cause groups 1 Congenital anomalies - No mention 2 Antepartum infections - ONS cause groups include maternal condition O353 (Maternal care for (suspected) damage to fetus from viral disease in mother, now code to P002 (Fetus/newborn affected by maternal infectious and parasitic diseases) – is it correct to assume antepartum?

IRIS mentions Vs. ONS mentions – Neonatal Deaths

Congenital Anomalies to Immaturity Majority mentioned Q33.6 Hypoplasia and dysplasia of lung Converted to P28.0 in IRIS Hypoplasia associated with short gestation Majority but not all recorded mentioned prematurity of some degree

Antepartum Infections - Stillbirths Other Specific Conditions: Coding of Anhydramnios IRIS codes to P02.7 ONS currently codes to P02.8 Remaining antepartum: Coding of maternal infections IRIS codes to P00.2 Assumed antepartum?

Further work Implications for UK data Publication of dual coded data Publication of mapping document Publication of the stillbirth and neonatal cause of death dictionaries

Talking/Discussion points How to we balance maintaining an accurate internationally comparable classification with monitoring trends over time? What do you need in terms of impact analysis? Do you use the ONS hierarchical cause groups (Wigglesworth codes)?

Death Certification Reform Harold Shipman (GP) certified the deaths of 250 victims without challenge Inquiry into Shipman's crimes in 2004 recommend: All deaths that do not require investigation by a coroner will undergo the independent scrutiny of a locally appointed Medical Examiner Independent and proportionate scrutiny of relevant health records, examining the deceased person’s body (in most cases) and in all cases discussing the death with a relative or other appropriate person.

31 Decision: is death reportable? Prepare MCCD Coroner’s Post Mortem Inquest Issue MCCD Form 99 or 120 & 121 Form 100B Registration of death Burial or Cremation Reportable Deaths & Enquires Current Process Talk with Relatives? Form100A Activities carried out by the Coronial Service Activities carried out by the Medical Examiners Service Activities carried out by Attending Doctor certifying death Key: Abbreviations: MEO = Medical Examiner’s Officer. Note: ME-1 is the proposed name of the form used to document information required for scrutiny. Advise NFA or 100A Form 6 or Burial Order Discussion with doctor Decision to carry out a PM or open Inquest Cremation Form 4 Cremation Form 5 Cremation Form 10 Verification of Fact of Death Activities carried out by other people / services Form 100A / “Part A” Informant delivers MCCD

32 Advise NFA or 100A Decision to carry out a PM or open Inquest Decision: is death reportable? Prepare MCCD Coroner’s Post Mortem Inquest Issue MCCD Form 99 or 120 & 121 Form 100B Burial or Cremation Reportable Deaths & Enquires Death certification Reform - New Process Talk with Relatives? Discussion with doctor Verification of Fact of Death Advice to Doctors & Coroner Referral Copy of MCCD, records & required info. Scrutiny by Medical Examiner ME-2 Decision to investigate death Initial AssessmentInvestigation Informant delivers MCCD Activities carried out by the Coronial Service Activities carried out by the Medical Examiners Service Activities carried out by Attending Doctor certifying death Key: Abbreviations: MEO = Medical Examiner’s Officer. Note: ME-1 is the proposed name of the form used to document information required for scrutiny. Activities carried out by other people / services Registration of death RME & NFA HMC-1 ME-2 Coroner’s Disposal Order Green Form MEO: Prep. for Scrutiny Information from public health surveillance and local clinical governance

Death Certification reform pilots The new process was piloted by the in six areas across England and Wales, commencing in Office for National Statistics (ONS) carried out a case study investigating records from five of the six pilot areas. The cause(s) of death proposed initially by the certifying medical practitioner and also the confirmed cause(s) of death following medical examiner scrutiny of the deceased’s medical history and hospital notes.

Impact More likely to add supplementary information to the death certificate. This often led to more conditions being mentioned and to the order in which they were presented on the cause of death certificate being altered. As a result there was a change to the underlying cause of death in 22 per cent of cases.

Impact by cause 1 % more death certificates with an underlying cause of cancer 6 % increase the proportion of deaths that were attributed to diseases of the circulatory system 7% decrease in deaths attributed to a respiratory disease In general, more conditions were mentioned on the death certificate as a result of scrutiny by medical examiners

Number of conditions mentioned

Implementation timetable - UK Scotland implemented in April 2015 England, Wales and Northern Ireland – implementation has be delayed until further consultation can be carried out. Will not be until after SR15

Where to get more information Statistical Bulletin and underlying data: on-the-potential-impact-on-mortality-statistics/england-and-wales/index.html

Thanks! Any questions? Contact: