NDTMS Themed Report - A Research Paper

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1 NDTMS Themed Report Deaths of those in contact with drug treatment services in the North West of England for the reporting period 003/04 and 004/0 Ayesha Khundakar, Caryl Beynon, Adam Marr, Jim McVeigh and Mark A. Bellis

2 Acknowledgements The authors would like to thank the following people for their help in the collection of data and in the production of the report: the staff at all treatment providers, along with the following colleagues at the Centre for Public Health; Jessica Salmon, Karen Hoare, Sarah Lake, James Ross, Claire Shaw, Kazem Khundakar and David Seddon. The authors would also like to thank the Drug (and Alcohol) Action Teams in the North West of England, along with the staff from regional and national NTA. The authors Ayesha Khundakar (tel , a.khundakar@ljmu.ac.uk) is the North West NDTMS Public Health Liaison Manager, based at the Centre for Public Health, Liverpool John Moores University. Caryl Beynon is the Drug Research Manager/ NDTMS analyst; Adam Marr is the NDTMS North West Regional Manager at the Centre for Public Health. Jim McVeigh is the Head of Substance Use at the Centre for Public Health/ Reader in Substance Use Epidemiology, and Mark A Bellis is the Director of the Centre for Public Health and the North West Public Health Observatory. This report, along with previous NDTMS publications by The Centre for Public Health, Liverpool John Moores University, is available on the CPH website The NDTMS regional team, based within the North West Public Health Observatory at the Centre for Public Health, Liverpool John Moores University, also produces monthly reports providing timely information from the NDTMS dataset, along with annual NDTMS reports. These reports are also available on the website. The Centre for Public Health, Liverpool John Moores University would welcome feedback on the contents of the report. Any comments or queries should be directed to: Ayesha Khundakar The Centre for Public Health Faculty of Health and Applied Social Sciences Liverpool John Moores University Castle House North Street Liverpool L3 AY A.Khundakar@ljmu.ac.uk

3 Summary This report details the causes of mortality of those identified, via the National Drug Treatment Monitoring System (NDTMS) dataset, as having died whilst in contact with structured drug treatment services in the North West of England within the years 003/04 and 004/0. The NDTMS was established to collect data on all clients in contact with structured drug treatment services (i.e. high threshold tier 3 and 4 services as defined by the Models of Care, see NTA, 00). The NDTMS dataset was used to identify drug users who had been reported by service providers as having died in years 003/04 and 004/0. The Office of National Statistics (ONS) provided semi-anonomised death certificates for those individuals confirmed as dead. This exercise established that, of the 9 death certificates received by the Centre for Public Health, Liverpool John Moores University, 9 individuals (30.9%) died from a drug related death (DRD) using the National Drug Strategy definition of a DRD (see below for explanation of the DRD definition). The majority of individuals died from other causes, for example bacterial and viral infections, liver disease and intentional self-harm. Whilst these deaths were not classed as a DRD according to the Drug Strategy, these causes of death were likely to be associated with drug use. Therefore, whilst only 30.9% of deaths were classed as a DRD, the majority of deaths within this dataset were likely to be drug-associated deaths. The results also found that those dying from DRD were significantly younger in comparison to those dying from causes not defined as DRD. The report highlights the need to address possible health and social problems that an ageing treatment population in the region may encounter, for example opportunistic infections after years of poor health. It also highlights the need to record deaths that, whilst not classed as DRD, are associated with prolonged drug use. This report is the first in a series of themed reports, based on the NDTMS North West regional dataset by the Centre for Public Health, Liverpool John Moores University. Drug Related Deaths (DRD) In 000, the Advisory Council on the Misuse of Drugs raised concern about the increasing number of deaths related to drug use within the UK (ACMD, 000), despite increases in average life expectancy for both males and females (ONS, 004). In response, the Department of Health Action Plan 00 initiated a plan to reduce the number of DRD (as classified by the National Drug Strategy definition of DRD) by 0% by 004. The Drug Strategy definition of a DRD is deaths where the underlying cause is poisoning, drug abuse or drug dependence and where any of the substances controlled under the Misuse of Drugs Act (97) are involved. According to this definition, the majority of DRD are related to acute drug toxicity and typically occur in young men under thirty years of age (NTA, 004). The following causes of death are included as a headline indicator of a DRD (the relevant codes from the World Health Organization International Classification of Disease Register version 0 (ICD-0) are given in brackets): a) Deaths where the underlying cause of death has been coded to the following categories of mental and behavioural disorders due to psychoactive substance use (excluding alcohol, tobacco and volatile solvents) (i) Opioids (F) (ii) Cannabinoids (F) (iii) Sedatives or hypnotics (F3) (iv) Cocaine (F4) (v) Other stimulants, including caffeine (F) (vi) Hallucinogens (F6) (vii) Multiple drug use and use of other psychoactive substances (F9) b) Deaths coded to the following categories and where a drug controlled under the Misuse of Drugs Act 97 was mentioned in the death record: (i) Accidental poisoning by drugs, medicaments and biological substances (X40-X44) (ii) Intentional self-poisoning by drugs, medicaments and biological substances (X60-X64) (iii) Poisoning by drugs, medicaments and biological substances, undetermined intent (Y0-Y4) (iv) Assault by drugs, medicaments and biological substances (X8) (v) Mental and behavioural disorders due to the use of volatile solvents (F8) 3

4 Drug associated deaths Whilst the government has set targets to reduce DRD according to the Drugs Strategy definition, concern has also been raised about the vulnerability of drug users to various infectious diseases which can result in considerable levels of morbidity and mortality (ACMD, 000; HPA et al., 00a), including viral infections (such as hepatitis C and HIV) and bacterial infections (such as tetanus and Staphylcoccus aureus). Evidence reveals that more than two in five injecting drug users have been infected with hepatitis C (HPA et al., 00). There is also evidence that individuals with a history of drug problems often encounter issues predisposing them to suicide, such as poor mental health, physical illness and social isolation. Research has also suggested a link between HIV and hepatitis C positive status (infections often linked to intravenous drug use) and suicide (ACMD, 000). The National Drug Treatment Monitoring System (NDTMS) The NDTMS was introduced in April 00 to collect data on all clients in contact with structured drug treatment services (i.e. high threshold tier 3 and 4 services as defined by the Models of Care, see National Treatment Agency (NTA), 00). NDTMS figures are used as a key source for monitoring the number of individuals in contact with drug treatment, whilst also being the basis for examining the success of the Government s commitment to double the number of people in drug treatment between 998 and 008. It is mandatory for all drug treatment agencies to report pseudoanonymised information on all individuals in contact with their service. Therefore, NDTMS offers a rich source of data on those in contact with structured drug treatment services. Methodology For this report, NDTMS data for all clients in contact with North West treatment services between April 003 and March 00 were interrogated to identify those drug users who were reported by the treatment providers as having died. The information was also used to investigate whether there had been any changes in the profile of individuals discharged as dead within the NDTMS dataset between 003/04 and 004/0 and also to identify any potential differences in the characteristics of those dying from a DRD, those dying from residual causes and those still alive within the NDTMS. The regional NDTMS dataset was interrogated to identify those individuals that had been reported by treatment providers as dying between April 003 and March 00. These individuals were identified from their attributor code (incorporating their initials, date of birth and gender) and information in relation to their partial postcode of residence, discharge date, agency name and agency client reference code were extracted from the dataset. Each individual was given a unique study number. The extracted information was sent to the reporting agency along with a request to identify each individual s full name. The agency was asked to post this information to the ONS in a pre-addressed, pre-paid envelope provided. Once the ONS had received client information from the reporting agency, death certificates were identified for each individual confirmed dead. The names were removed from death certificates and replaced with the unique study number. The anonymous death certificates, containing cause of death (in accordance with the World Health Organization International Classification of Disease Register version 0 see verdict of inquest (if one took place) and the clients unique study number were returned to the Centre for Public Health, Liverpool John Moores University 4

5 Results Table one shows that 9 individuals of the 8 individuals reported to be dead were confirmed as such by the ONS. Table one: Mortality status for drug users reported by treatment services as dying during 003/04 and 004/0 Mortality Status Male N % Female N 4% Total N % Confirmed dead Confirmed alive Status unknown Missing Total The average (mean) age of those confirmed as dead was 37.9 years. There was no significant difference in the ages of those confirmed as dead between 003/04 (mean 38.0) and 004/0 (mean 37.8). Those confirmed as dead were significantly older in comparison those still alive within the NDTMS dataset at the end of the reporting year (mean age 3.6) (p<0.00). A large minority of those confirmed as dead did not have an inquest (n= 88, 46.%). Of the 03 inquests, a verdict of misuse of drugs was recorded for 7 (6.%). Table two: Inquest verdicts for those individuals confirmed as dying during 003/04 and 004/0 Verdict Number Suicide 3 Accidental Misadventure 7 Open 0 Natural Misuse of drugs 7 No inquest 88 Total 9 According to the drugs strategy definition of DRD, 9 (30.9%) of those confirmed as dead had died from a DRD. Therefore, the majority of those confirmed as dead had died from causes other than DRD. Table three shows the number of people dying from DRD according to the ICD-0 codes for DRD. Of the 9 individuals classified as dying from a DRD, 8 were attributed to the harmful or dependent use of opioids. Confirmed alive through contact with GP Could not be confirmed alive or dead by the ONS. Could have died abroad or awaiting verdict following a coroners inquest 3 Data missing due to the drug treatment agency not sending client information to the ONS

6 Table three: Deaths classified as drug related according to the UK Drugs Strategy DRD definition during 003/04 and 004/0 ICD 0 Code F F F F9 F9 X4* X44* Underlying cause of death Mental and behavioural disorders due to use of opioids; harmful use Mental and behavioural disorders due to use of opioids; dependence syndrome Mental and behavioural disorders due to the use of other stimulants, including caffeine; harmful use Mental and behavioural disorders due to multiple drug use and use of other psychoactive substances; harmful use Mental and behavioural disorders due to multiple drug use and use of other psychoactive substances; dependence syndrome Underlying or secondary cause of death Accidental poisoning by and exposure to narcotics and psychodysleptics (hallucinogens), not elsewhere classified Accidental poisoning by and exposure to other and unspecified drugs, medicaments and biological substances Number F8* Mental and behavioural disorders due to the use of volatile solvents * Accompanied by an ICD-0 code indicating the involvement of a drug controlled under the Misuse of Drugs Act 97 Those individuals who died from a DRD were significantly younger (mean age 34.) than those who died from other causes (mean age 39.) (p<0.00) Percentage 0 DRD non DRD Age bands Figure one: Percentage of each age group reported to have died from a DRD and non-drd 6

7 There was no significant difference in the proportion of males and females who were confirmed as dead between 003/04 and 004/0. There was also no significant difference in the proportion of males and females dying of a DRD and those dying of a non-drd neither within year cohorts nor when both years were combined. Table four: Gender and DRD status for those confirmed as dead Year Male DRD Non DRD Female DRD Non DRD 003/ / Total The majority of individuals (n=3, 69.%) died from causes not classified as a DRD. Figure two reveals that a large proportion of deaths classified as non-drd resulted from diseases of the liver (n=8, 30.%), intentional self harm (n=3,.0%), influenza and pneumonia (n=, 0.3%) and malignant neoplasms (n=, 0.3%), two of which were neoplasms of the liver. Of interest, there was an increase in the number of deaths from an underlying cause of hepatitis between the two years from in 003/4 to 6 in 004/0. Appendix one provides more detail on the causes of death for the 3 non-drd Number Bacterial diseases Hepatitis Mycoses Neoplasms Diseases of the blood Diabetes Mental and behavioural disorders Other Diseases of the CNS Inflamatory diseases of the CNS Ischaemic heart disease Other heart disease Cerebrovascular Diseases of Veins Influenza and pneumonia Lower acute respiratory Chronic lower respiratory Supportive and necrotic conditions Enteritis and Collitis Disease of the liver Infection of the skin Arthropathies Illdefined, unknown Accidents Intentional self harm Events of undetermined intent Figure two: Underlying causes of death for those classified as dying from a non-drd in 003/04 and 004/0 7

8 Findings/implications The analysis of two years NDTMS data has provided a large data source for the determination of the main causes of death for those in contact with structured drug treatment services. Analysis of these data has revealed that 9 (30.9%) of those confirmed as dead died from a DRD. Almost two thirds of deaths were as a result of deaths classified as nondrug related (n= 3, 69.%), and this non-drd group were significantly older than those dying from a DRD. As the treatment population within the North West ages (Khundakar et al., 006) and the length of time they have been using drugs increases, treatment must become more holistic to address both health and social issues. Older drug users are at more risk of drug-associated infection and disease such as pneumonia and hepatitis due to prolonged drug use, usually coupled with social deprivation. Hepatitis and bacterial diseases The results from this report highlight the vulnerability of drug users to a diverse range of infections such as hepatitis B and C. Amongst deaths classified as non-drug related, a number of drug users died from bacterial infections including pneumonia, septicaemia and celluitis. Injecting drug users (IDUs) are vulnerable to infections due to injecting with non-sterile equipment and risky injecting behaviour (HPA et al., 00a). There has been a rise in the number of deaths where the underlying cause of death was hepatitis C in the North West of England NDTMS dataset from one in 003/04 to four in 004/0. Hepatitis C is currently the most significant infectious disease affecting those who inject drugs. Between 99 and 004 there have been diagnoses of hepatitis C infections in the UK to the Centre for Infections. The majority of these infections will most probably have been acquired through injecting drug use as over 90% of those diagnoses with risk factor information gave this as a route of infection. The highest number of reports of hepatitis C infection came from the North West region (HPA et al., 00 a and b). The Unlinked Anonymous Prevalence Monitoring Programme survey (UAPMP) has measured the prevalence of hepatitis C in oral fluid specimens supplied by IDUs attending treatment services. In 004, 4% of current and former IDUs who took part in the UAPMP agency survey tested positive for hepatitis C. Regional variations were identified in the prevalence of hepatitis C using the UAPMP data, with highest prevalence levels found in the North West treatment population (HPA, 00b). As the North West currently contains the highest prevalence of hepatitis C in the country amongst its intreatment population, morbidity and mortality from this disease will be an increasingly important issue for D(A)ATs and treatment agencies within the region. The increase in the number of deaths amongst those in contact with structured drug treatment from hepatitis B and C during 003/04 and 004/0 highlights the need for hepatitis C screening and hepatitis B vaccination for those in treatment, along with harm reduction information on safer injecting practices. Alcohol The results of this investigation reveal that 8 individuals within the NDTMS dataset for 003/04 and 004/0 died as a result of liver disease. There has been an increase in the incidence of deaths from diseases of the liver in the dataset from eight in 003/04 to 0 in 004/0. A substantial proportion of these deaths (n= ) were directly linked to the use of alcohol. An estimated % of drug users may also have an alcohol problem (Prime Ministers Strategy Unit, 004). Alcohol is one of the most frequently reported secondary problem substances for those in contact with treatment services (Khundakar et al., 006), and drug users often report alcohol abuse after drug treatment has been completed (Lehman and Simpson, 990; Gossop et al., 000). Outcomes after drug treatment in terms of alcohol consumption are often poor with many alcohol users making little or no change in their pre-treatment drinking (Gossop et al., 000). This highlights a possible need within drug treatment services to address the needs of drug users who also have issues related to alcoholism. The incidence of liver disease and liver cancer amongst those in contact with treatment agencies again highlights the significance of hepatitis within the population. Around 80% of those acquiring hepatitis C develop chronic infection and are at risk of developing cirrhosis and liver cancer. Four individuals whose underlying cause of death was liver disease also had hepatitis as a secondary cause of death. 8

9 Suicide A number of non-drd were recorded as intentional self harm (n=3, 9.9%). Psychological and psychiatric disorders often occur in conjunction with drug misuse problems. High psychiatric symptom levels have been found at intake to treatment among drug users entering treatment programmes in England, with approximately one in five having previously received treatment for a psychiatric health problem (Marsden et al., 000). Whilst there were 3 cases of death from intentional self-harm, a number of other deaths may have occurred due to suicidal behaviour. Acute drug toxicity may have occurred with suicidal intent as, in a study of nonfatal overdoses, 0% of heroin users reported taking a deliberate overdose (Gossop et al., 996). Some of the deaths classified as from events of undetermined intent may have also resulted from suicidal behaviour but with insufficient evidence to be classed as intentional selfharm. These included three deaths from poisoning, two from strangulation and one from drowning. Conclusions Whilst 3 of the 9 deaths (69.%) were classified as non-drd, it is likely that the vast majority of these deaths were actually associated with drug use. The report has highlighted the links between drug use and bacterial and viral infections, liver disease and suicide. Therefore, it is arguable that the majority of deaths of those in contact with treatment in the North West should be classed as drug-associated deaths (i.e. the death was likely to have occurred due to prolonged drug use and/or behaviour associated with drug use). There is a need to record these drugassociated deaths to determine the actual number of deaths of those in contact with treatment services caused by drug use. Future reporting of deaths from the in-treatment population by the Centre for Public Health, Liverpool John Moores University, will monitor the number of DRD and drug-associated deaths and highlight the possible public health implications of these findings. Developments in NDTMS reporting In recognition of the importance of hepatitis infection amongst those in contact with treatment services, the NTA started a national data collection initiative for the monitoring of hepatitis C testing of clients in April 00; most recent hepatitis C test date for each client is ascertained, and whether the test was performed within the current treatment episode or prior to the episode. The new strategy also includes monitoring of hepatitis B vaccination. These new pieces of information have been included within the NDTMS dataset. The Centre for Public Health, Liverpool John Moores University, is to begin reporting the number of individuals reported by treatment providers to the NDTMS as having died on a quarterly basis. The number of people reported by treatment providers as dead will be reported by their D(A)AT of residence and by their D(A)AT of treatment. 9

10 Appendix one: Deaths classified as non-drug related during 003/04 and 004/0 Underlying cause of death Mortality category Number of deaths Specific cause of death Number of deaths Bacterial diseases Viral hepatitis 3 Septicaemia due to streptococcus pneumoniae Septicaemia unspecified 7 Acute viral hepatitis C Acute viral hepatitis B Mycoses Unspecified mycosis Malignant neoplasm Range of anatomical sites Diseases of blood and blood forming organs involving the immune mechanism Agranucytosis Diabetes mellitus 4 Insulin dependent DM with ketoacidosis Unspecified DM with ketoacidosis Unspecified without complications Mental and behavioural disorders due to psychoactive substance use Inflammatory diseases of the Central Nervous System Other disorders of the Central Nervous System Mental and behavioural disorders due to volatile substance use Meningitis, unspecified Encephalopathy, unspecified 7 Acute myocardial infarction Ischaemic heart disease Atherosclerotic heart disease Other forms of heart disease 4 Acute and sub acute infective endocarditis Haemopericardium, not elsewhere specified Aortic valve disorder Endocarditis, valve unspecified Cerebrovascular diseases Subarachnoid haemorrhage unspecified Intracerebral haemorrhage, unspecified Cerebral infarction 0

11 Diseases of the veins, lymphatic vessels and lymph nodes Deep vein thrombosis of the lower extremity Influenza and pneumonia Pneumonia due to staphylococcus Pneumonia due to other streptococci Bronchopneumonia, unspecified Lobar pneumonia, unspecified Pneumonia, unspecified Lower acute respiratory infections Lower acute respiratory infection, unspecified Chronic lower respiratory diseases 9 Emphysema, unspecified Chronic obstructive pulmonary disease Asthma Supportive and necrotic conditions of the 3 Pyothorax (abscess) without fistula lower respiratory tract Pyothorax with fistula Noninfective enteritis and colitis Non infective gastroenteritis and colitis Diseases of the liver 8 Alcoholic fatty liver Alcoholic cirrhosis of the liver Alcoholic hepatic failure Alcoholic liver disease, unspecified Other and unspecified cirrhosis of the liver Fatty liver, not elsewhere classified Infections of the skin and subcutaneous tissue Celluitis Arthropathies Pyogenic arthritis, unspecified Ill defined and unknown causes Ill defined and unspecified causes Accidents 0 Pedestrian Motorcyclist Car occupant Fall, trip or stumble Exposure to uncontrolled fire in building or structure Accidental poisoning 4 Intentional self harm 3 Number of methods 3 Events of undetermined intent Poisoning Hanging/ strangulation Drowning Falling from a high place Other events of undetermined intent Unspecified event, undetermined intent 3 4

12 References Advisory Council on the Misuse of Drugs (000). Reducing Drug Related Deaths. London, The Stationery Office. Gossop, M, Griffiths, P, Powis, B, Williamson, S and Strang, J (996). Frequency of non-fatal overdose: survey of heroin users recruited in non-clinical settings. British Medical Journal 33:40. Gossop, M, Marsden, J, Stewart, D and Rolfe, A (000). Patterns of drinking and drinking outcomes among drug misusers: one year follow up results. Journal of Substance Abuse Treatment, 9: 4-0. Health Protection Agency, SCIEH, National Public Health Service for Wales, CDSC Northern Ireland, CRDHB and the UASSG (00a). Shooting Up. Infections among injecting drug users in the United Kingdom 004. An Update: October 00. London: Health Protection Agency. Health Protection Agency (00b). Hepatitis C in England. The st Health Protection Agency annual report 00. London, HPA Centre for Infections. Khundakar, A, Marr, A, McVeigh, J and Bellis, M A. Drug Treatment in the North West of England 00/06. Results from the National Drug Treatment Monitoring System (NDTMS). Liverpool: Liverpool John Moores University. Marsden, J, Gossop, M, Stewart, D, Rolfe, A and Farrell (000). Psychiatric symptoms amongst clients seeking treatment for drug dependence: intake data from the National Treatment Outcome Research Study. British Journal of Psychiatry. 76, National Treatment Agency for Substance Misuse (00). Models of Care of Substance Misuse. London: National Treatment Agency for Substance Misuse. National Treatment Agency for Substance Misuse (004). Commissioning services to reduce drug related deaths. London: National Treatment Agency for Substance Misuse. Office of National Statistics (004). Health Expectancy. Available at Prime Ministers Strategy Unit (004). Alcohol harm reduction strategy for England. Prime Ministers Strategy unit, Cabinet Office: London. Published by Centre for Public Health Faculty of Health and Applied Social Sciences Castle House, North Street, Liverpool, L3 AY Tel: +44 (0) ndtms@ljmu.ac.uk