Public Health Wales Early years pathfinder project Substance misuse (alcohol and drugs) Early Years Pathfinder Project Substance misuse (alcohol and drugs) Author: Dr Sarah J Jones, Consultant in Environmental Health Protection Contributors: Craig Jones, Senior Health Promotion Practitioner, Alcohol, Public Health Wales Josie Smith, Research Scientist, Health Protection, Public Health Wales Chris Weaver, BCUHB, Substance misuse liaison midwife Julie Evans, Cwm Taf HB, Senior Midwife Rhys Sinnett, Principal Public Health Practitioner, Hywel Dda Public Health Team Jackie Williams, Senior Health Promotion Practitioner, Aneurin Bevan Public Health Team Sophia Bird, Principal Public Health Practitioner, Powys Public Health Team Lynne Hockey, Clinical information analyst, ATTRACT Jon Brassey, Support Manager, ATTRACT Date: 8 May 2013 Version: 0d Review Date: Purpose and Summary of Document: To outline the epidemiology of alcohol and substance misuse during pregnancy and early years, to review the evidence of effectiveness for interventions to reduce alcohol and substance misuse during pregnancy and early years and to outline the current provision of services to reduce alcohol and substance misuse during pregnancy and early years. Work Plan reference: Date: 8 May 2013 Version: 0d Page: 1 of 46 Public Health Wales 1 Summary 1.1 Background Early years pathfinder project Substance misuse (alcohol and drugs) This document briefly reviews the evidence around the prevalence of substance misuse during pregnancy and the implications of this during pregnancy and early years (EY). It then examines the epidemiology of substance misuse in Wales, as far as is possible using currently available data, before reviewing the evidence for interventions to identify substance misusing women who are pregnant and also to ‘treat’ their misuse. Finally, detail is provided on current service provision in Wales. The document uses the ‘catch all’ term substance misuse, but also uses alcohol misuse and drug misuse to describe issues in relation to these situations specifically. This review covers “[the] regular use of recreational drugs, misuse of over-the-counter medications, misuse of prescription medications, misuse of alcohol or misuse of volatile substances to an extent whereby physical dependence or harm is a risk to the woman and / or her unborn baby”. It does not cover tobacco or caffeine. 1.1.1 Alcohol Alcohol is known to pass freely across the placenta from mother to child, but the precise effects of this are not clear. As a result, clear guidance on alcohol consumption during pregnancy is lacking both in the UK and internationally. There is little, if any, published data describing the prevalence of alcohol consumption by pregnant women in the UK. Internationally, it has been suggested that up to 60% of pregnant women consume alcohol, with up to 50% binge drinking at least once (Kalin et al, 2010; Kesmodal et al, 2003). 1.1.2 Drug misuse Drug misuse covers prescription and recreational drugs, both legal and illegal. While prescription drugs tend to carry guidance on use by pregnant women, the general assumption about recreational drugs appears to be that that any consumption is harmful. UK data suggests that around 15% of pregnant women have used cannabis or other illicit substances, with around 1-2% using heroin or cocaine (Sherwood et al, 1999; Crome and Kumar, 2007; Williamson et al, 2007). Much of the international data on substance misuse is from the USA and it is difficult to assess how applicable these data are outside of Date: 8 May 2013 Version: 0d Page: 2 of 46 Public Health Wales Early years pathfinder project Substance misuse (alcohol and drugs) the US. It is suggested that up to 27% of pregnant US women have used cannabis, with 1.6 to 9.5% using cocaine or opiates. 1.1.3 Alcohol - outcomes There is a link between alcohol consumption and complications or problems during both pregnancy and EY. However, there is a lack of clear data demonstrating the outcomes for any given level of consumption. On this basis, the application of the precautionary principle and guidance not to drink at all during pregnancy is only appropriate. 1.1.4 Drug misuse – outcomes Based on the evidence available, mainly in relation to illegal drugs, there are consistently poor outcomes associated with drug misuse during pregnancy. Whilst the precise outcomes appear to vary with the substance used intra-uterine growth retardation (IUGR), placental abruption and still birth are common across multiple substances. 1.2 Epidemiology There is a clear lack of data on the prevalence of substance misuse during pregnancy and the incidence of harmful outcomes resulting from these behaviours. The Infant Feeding Survey (IFS) appears to offer more promise in terms of understanding and addressing substance misuse issues, even given that the data are likely to underestimate the prevalence of the problem and suffer a number of biases. As long as these data are understood to be a low estimate they can be used with appropriate caution. In addition, it is difficult to see how else these data could be collected. Without better data, adequately planning and managing services to tackle these issues is almost impossible. 1.3 Evidence In terms of screening, AUDIT-C appears able to identify problem drinking amongst pregnant women, but TWEAK and T-ACE are also effective screening tools. However, there is little or no evidence in relation to effective interventions for addressing substance misuse during pregnancy and EY. 1.4 Service provision Service provision varies around Wales. The focus appears mainly to be on drug misuse and safeguarding. Date: 6 September 2012 Version: 0b Page: 3 of 46 Public Health Wales 1.5 Early years pathfinder project Substance misuse (alcohol and drugs) Conclusions There are obviously significant problems associated with substance misuse during pregnancy, but there are many difficulties with determining the response needed to these problems, mainly because of a lack of knowledge and understanding. 1. The dose: response relationship between alcohol and negative outcomes is not clear. 2. The links between drug misuse and negative outcomes is not clear. There is a particular lack of controlling for socio-economic confounders in analysis. 3. The prevalence of substance misuse during pregnancy is not clear, but given the prevalence of excess alcohol consumption in the population, it is likely that many women are consuming harmful amounts of alcohol pre-pregnancy and pre-pregnancy recognition. 4. There is some evidence of effectiveness for screening tools to detect substance misuse in pregnant women, but no good evidence for interventions to address the issue. 5. The services that are currently in place appear to focus on drug misuse and the associated safeguarding issues. 1.6 Recommendations 1. All pregnant women should be given advice to moderate their drinking, but older, professional women, in particular, should be targeted. 2. To support this, all health care professionals who are in contact with women who are either pregnant or thinking of becoming pregnant should be trained to deliver alcohol brief interventions (ABI). However, given the lack of good quality evidence in this area generally, robust evaluation of such an approach would need to be carried out to inform the evidence base. 3. In addition, advice is both easier to give and act upon when the message is consistent. Constant changes to advice in relation to alcohol are unhelpful, cause confusion and can also result in a lack of trust and regard for future messages, not only in relation to alcohol, but also for other health issues. Significant efforts are therefore needed to establish an appropriate guideline, with a regular time table for review. 4. Collection of more accurate data around substance misuse prevalence and pregnancy outcomes is needed, but careful consideration of how to collect these data accurately is also essential. Date: 6 September 2012 Version: 0b Page: 4 of 46 Public Health Wales 1.7 Early years pathfinder project Substance misuse (alcohol and drugs) Update on recommendations To support the delivery of recommendation 2, the Public Health Wales programme to reduce alcohol related harm has been delivering alcohol brief intervention (ABI) training to midwives. Delivery is influenced by Health Board priorities; to date, just 13.2% of Welsh midwives have been trained to deliver ABI. Date: 6 September 2012 Version: 0b Page: 5 of 46 Public Health Wales Early years pathfinder project Substance misuse (alcohol and drugs) Contents 1 SUMMARY ............................................................................... 2 1.1 Background.......................................................................... 2 1.1.1 Alcohol .......................................................................... 2 1.1.2 Drug misuse ................................................................... 2 1.1.3 Alcohol - outcomes .......................................................... 3 1.1.4 Drug misuse – outcomes.................................................. 3 1.2 Epidemiology ....................................................................... 3 1.3 Evidence .............................................................................. 3 1.4 Service provision .................................................................. 3 1.5 Conclusions .......................................................................... 4 1.6 Recommendations ................................................................ 4 2 BACKGROUND ......................................................................... 8 2.1 Terminology ......................................................................... 8 2.2 Alcohol consumption guidelines .............................................. 8 2.2.1 Policies from other countries ............................................ 9 2.2.2 Minimum legal drinking age ............................................ 10 2.2.3 Consumption during pregnancy and early years - Wales and UK 12 2.2.4 Consumption during pregnancy in other countries ............. 12 2.3 Drug misuse........................................................................ 12 2.3.1 Drug misuse during pregnancy and early years - UK.......... 13 2.3.2 Drug misuse during pregnancy in other countries .............. 13 2.4 Outcomes of alcohol misuse during pregnancy and early years .. 14 2.4.1 Pre-pregnancy, pre-pregnancy recognition, pregnancy....... 14 2.4.2 Early years – ‘regular’ alcohol consumption ...................... 15 2.4.3 Early years – binge drinking ........................................... 15 2.4.4 Conclusions .................................................................. 16 2.5 Outcomes of substance misuse during pregnancy and early years ......................................................................................... 17 2.5.1 Pre-pregnancy, pre-pregnancy recognition, pregnancy....... 17 2.5.2 Early years ................................................................... 18 2.5.3 Conclusions .................................................................. 18 2.6 Policy context ...................................................................... 19 3 EPIDEMIOLOGY .................................................................... 20 3.1 Patient Episode Database Wales – PEDW ................................ 20 3.1.1 P04.3, P04.4, P04.9 ...................................................... 21 3.1.2 P96.1 – withdrawal from drugs of addiction ...................... 21 3.1.3 Q86 – foetal alcohol syndrome........................................ 22 3.2 Infant feeding surveys .......................................................... 23 3.3 Infant feeding survey - 2005 ................................................. 23 3.3.1 Wales .......................................................................... 23 3.3.2 UK .............................................................................. 24 3.4 Infant feeding survey – 2010 ................................................ 26 3.5 Summary comments ............................................................ 26 4 EVIDENCE OF EFFECTIVENESS .............................................. 28 Date: 6 September 2012 Version: 0b Page: 6 of 46 Public Health Wales Early years pathfinder project Substance misuse (alcohol and drugs) 4.1 Introduction ........................................................................ 28 4.2 Methods ............................................................................. 28 4.3 Screening for substance misuse ............................................. 29 4.4 Interventions for alcohol misuse ............................................ 30 4.5 Interventions for drug misuse during pregnancy ...................... 30 4.6 Interventions for substance misuse during pregnancy .............. 30 4.7 Interventions for FAS ........................................................... 31 5 CURRENT SERVICE PROVISION ............................................ 32 5.1 Antenatal care guidelines ...................................................... 32 5.2 Current service provision by Health Board ............................... 33 5.2.1 Aneurin Bevan Health Board / Gwent APB ........................ 33 5.2.2 Betsi Cadwaladr Health Board ......................................... 34 5.2.3 Powys Health Board ...................................................... 34 5.2.4 Cardiff and Vale Health Board ......................................... 34 5.2.5 Cwm Taf Health Board ................................................... 34 5.2.6 Hywel Dda Health Board ................................................ 35 5.2.7 Abertawe Bro Morgannwg Health Board ........................... 36 6 CONCLUSIONS AND RECOMMENDATIONS ............................. 39 6.1 Recommendations ..................... Error! Bookmark not defined. 7 REFERENCES ......................................................................... 40 Date: 6 September 2012 Version: 0b Page: 7 of 46 Public Health Wales 2 Background 2.1 Terminology Early years pathfinder project Substance misuse (alcohol and drugs) The term ‘substance misuse’ can cover both alcohol and/or drugs and in relation to pregnancy be defined as the “regular use of recreational drugs, misuse of over-the-counter medications, misuse of prescription medications, misuse of alcohol or misuse of volatile substances (such as solvents or inhalants) to an extent whereby physical dependence or harm is a risk to the woman and/or her unborn baby” (NICE, 2011). However, ‘substance misuse’ is not always used to cover both of these broad categories and much of the literature focuses on one or the other. This may be due to the fact that alcohol is wholly ‘legal’, with government issued guidelines on consumption which leads to inaccurate assumptions about the safety of consumption, whilst drug misuse covers both legal and illegal substances. This document uses the terms ‘alcohol misuse’ and ‘drug misuse’ to describe these issues separately and refers to ‘substance misuse’ as a general catch-all. One of the key reasons for doing this is the need to address alcohol related harm. There is a general lack of awareness, both amongst the general public and health professionals, about the prevalence of the harmful consumption of alcohol and the extent to which alcohol related harm exists. This is reflected in the Welsh Government policy on substance misuse “Working together to reduce harm” (WG, 2008), which highlights the fact that the harmful use of alcohol is far more widespread than that of drugs. It seems not unreasonable to suggest that the harmful use of alcohol is almost universal and that approaches to managing the problem should regard this as the start point. Therefore, the terms are split to emphasise the need to address alcohol as a misused substance, in the population as a whole, in the same way as is necessary with drugs. Caffeine is not included in this review, however, the use / misuse of caffeine mainly in energy drinks, should be considered for future updates. Tobacco is also excluded, but is covered elsewhere. 2.2 Alcohol consumption guidelines Consumption of alcohol during pregnancy is a complex issue; alcohol passes freely across the placenta from mother to foetus, but the precise effects of it are not clear. Possible outcomes of excessive alcohol consumption during pregnancy may include miscarriage, stillbirth, low birth weight (LBW), learning disabilities and hyperactivity as well as foetal alcohol spectrum disorder (FASD) (Nilsen, 2009; Botchway, 2012). Date: 6 September 2012 Version: 0b Page: 8 of 46 Public Health Wales Early years pathfinder project Substance misuse (alcohol and drugs) However, definitive ‘dose-response’ evidence is lacking and not all women who drink heavily during pregnancy give birth to babies with FASD. This means that there is a lack of good quality evidence about how much it is safe to drink. The House of Commons Science and Technology Committee (2011) reviewed the available evidence and concluded that there are no safe limits and that a great deal of uncertainty remains, producing contrasting but equally probable concluding statements:1. There is no evidence for a level of risk free drinking during pregnancy 2. Drinking one or two units once or twice per week has not been shown to be harmful. The Committee highlighted the lack of consideration of the available evidence in relation to the production of guidelines by the Department of Health (DH) (HCSTC, 2011). It then went on to conclude that advice produced by the UK Chief Medical Officers (CMOs), encouraging abstinence but providing advice for women who do wish to drink alcohol, adequately balanced scientific uncertainty with a precautionary approach and provided the most appropriate guidance in relation to drinking during pregnancy (HCSTC, 2011). Recently, the UK DH produced guidance based on the recommendations of the UK CMOs and suggested that pregnant women should avoid drinking alcohol, but that if they did choose to drink, they should not drink any more than 1 or 2 units1 of alcohol once or twice per week and should not get drunk. In addition, NICE (2010b) recommend not drinking at all during the first three months of pregnancy because of the increased risk of miscarriage. It is also recommended that getting drunk or binge drinking (defined as 5+ standard drinks or 7.5 UK units on a single occasion), may be harmful to the unborn baby (NICE, 2010b). However, it should also be noted that the DH uses the Office for National Statistics (ONS) definition of heavy drinking as a proxy for binge drinking, referring to 6+ units (for women) over the course of an evening or similar time span (BMA, 2007). 2.2.1 Policies from other countries Therefore the UK lacks clear guidance on safe levels of alcohol consumption within the general population and for pregnant women. However, review of guidance in place in other countries suggests that this lack of clarity is not uncommon (Furtwaengler and De Visser, 2012). 1 In the UK, a standard drink, or unit of alcohol, refers to 8g ethanol (Furtwaengler and De Visser, 2012) Date: 6 September 2012 Version: 0b Page: 9 of 46 Public Health Wales Early years pathfinder project Substance misuse (alcohol and drugs) Whilst ‘moderation’ is recommended consistently, what moderation is is rarely defined; similarly a ‘standard drink’ lacks clear definition (Furtwaengler and De Visser, 2012). The WHO Europe recommend a maximum of two standard drinks (20g ethanol) per day, for both men and women, and that pregnant women should be alcohol free (Furtwaengler and De Visser, 2012). In the UK, a standard drink (unit of alcohol) refers to 8g ethanol; in Slovakia, it is 14g ethanol (Furtwaengler and De Visser, 2012; Date: 6 September 2012 Version: 0b Page: 10 of 46 Public Health Wales Early years pathfinder project Substance misuse (alcohol and drugs) Table 1). Some countries produce daily guidelines, some daily and weekly, some weekly only; the weekly guideline may be 7 times the daily guideline, or it may allow for alcohol free days (Furtwaengler and De Visser, 2012). The list shown is based on an initial review of 57 countries, of which 27 were found to have low risk drinking guidelines that could be expressed in grams of ethanol. Further review found that 145 countries have specified limits on alcohol consumption whilst driving, but just 14 have published guidelines on consumption during pregnancy, all of which recommend not drinking at all (Furtwaengler and De Visser, 2012). In some countries, women are also advised not to drink during the first few months of a baby’s life nor if they are planning to become pregnant. The review concluded that a standard drink should be 10g ethanol, that women should drink no more than two standard drinks per day (12 per week), men no more than 3 standard drinks per day (18 per week) and that pregnant and breast feeding women should not consume any alcohol. In addition, men and women should have at least one alcohol free day per week (Furtwaengler and De Visser, 2012). All of these issues highlight that making comparisons between countries, generalising the findings of research carried out in different countries and applying interventions that have good evidence of effect in other countries, is very difficult. 2.2.2 Minimum legal drinking age Minimum legal drinking age is also an important part of understanding likelihood of alcohol consumption during pregnancy. In the UK, the minimum is 18 years, as it is across most countries of the world. In the USA it is up to 21 years, with state to state variations, whilst in a number of countries, including Germany, Greece, Norway, Poland, Portugal, Spain it is 16 years (Hanson, 2012). However, in many places, exemptions apply that mean that consumption is permitted at younger ages under certain conditions, for example, whilst drinking at home with parents. Date: 6 September 2012 Version: 0b Page: 11 of 46 Public Health Wales Early years pathfinder project Substance misuse (alcohol and drugs) Table 1:- Summary of international guidelines on recommended daily alcohol consumption. Adapted from Furtwaengler and De Visser (2012). USA g ethanol per standard drink / unit 14 Recommended daily consumption Males Females g ethanol units g ethanol units 56 4 42 3 Guidelines for consumption during pregnancy? Yes Mexico -- 48 -- 36 -- Ireland 10 40 4 30 3 Estonia 10 40 4 20 2 Poland 10 40 4 20 2 Switzerland 10 40 4 20 2 Yes Italy 12 36 3 24 2 Yes South Africa 12 36 3 24 2 UK 8 32 4 24 3 Brazil 10 30 3 20 2 Bulgaria 10 30 3 20 2 France 10 30 3 20 2 Yes Netherlands 10 30 3 20 2 Yes New Zealand 10 30 3 20 2 Yes Singapore 10 30 3 20 2 Spain 10 30 3 20 2 Slovakia 14 28 2 14 1 Canada 13.45 40.35 3 26.9 2 Austria -- 24 -- 16 -- Czech Republic -- 24 -- 16 -- Germany 12 24 2 12 1 Iceland 12 24 2 12 1 Australia 10 20 2 20 2 Portugal 10 20 2 20 2 Finland 12 20 1.7 10 0.8 Hong Kong 10 20 2 10 1 Slovenia 10 20 2 10 1 Denmark 12 -- -- -- -- Lithuania 10 -- -- -- -- Sweden 12 -- -- -- -- Yes Kenya -- -- -- -- -- Yes Norway -- -- -- -- -- Yes Date: 6 September 2012 Version: 0b Yes Yes Yes Yes Yes Page: 12 of 46 Public Health Wales 2.2.3 Early years pathfinder project Substance misuse (alcohol and drugs) Consumption during pregnancy and EY Whilst many women reduce their alcohol consumption once they know that they are pregnant, high consumption levels in the time between becoming pregnant and recognising a pregnancy may be common. 2.2.4 Consumption during pregnancy and EY - Wales and UK There is little available data describing the extent to which alcohol is consumed by pregnant women in the UK. However, it has been suggested that 64,000 Welsh children may be adversely affected by parental alcohol problems (NPHS, 2006). 2.2.5 Consumption during pregnancy in other countries International estimates of alcohol exposure range from 0.2% to 14.8% depending on the stage of pregnancy, definition of exposure, diagnostic classification and method of assessment (Crome and Kumar, 2007). In Australia, it has been estimated that 47% of pregnant and / or breast feeding women were using alcohol (Turner et al, 2003). However, more recent data suggest that this had risen to 59% (Kalin et al, 2010). Risky alcohol use during the first 6 weeks of pregnancy has been estimated at 15% in Sweden (Magnusson et al, 2005). In the USA, 9% to 15% of pregnant 18 to 44 year olds use alcohol, with 2% to 4% binge drinking (CDC, 2006; Shankaran et al, 2007; SAMHSA, 2003; Guerrini et al, 2009). Alcohol consumption during pregnancy has also been estimated at 30% in Sweden, 52% in France and 60% in Russia (Kalin et al, 2010). A Danish study found that 10-25% of women were binge drinking and that 50% binged at least once in the pre-pregnancy recognition period (Kesmodal, 2001; Kesmodal et al, 2003). 2.3 Drug misuse Therefore, clear guidelines in relation to safe alcohol consumption during pregnancy are difficult to establish. For over-the-counter (OTC) and prescription drugs, there is often much clearer guidance available in relation to the harms associated with use or misuse. The harm associated with, e.g. thalidomide, in the past is well documented and appears to have contributed to the development of more robust testing and guidance. For recreational drugs however, evidence is again vague; the presumption appears to be that any use of illegal drugs is harmful. However, recent guidance from NICE, stated that the direct effects of cannabis on the foetus are uncertain, but it may be harmful, not least because cannabis use is associated with smoking and smoking is known to be harmful, Date: 6 September 2012 Version: 0b Page: 13 of 46 Public Health Wales Early years pathfinder project Substance misuse (alcohol and drugs) therefore women should be discouraged from using cannabis while pregnant (NICE, 2010b). Recreational drugs that are not illegal, with the exception of tobacco and caffeine, also appear to fall under this general heading. 2.3.1 Drug misuse during pregnancy and early years - UK The Confidential Enquiry into Maternal Deaths in the UK 2000 to 2002 found that 8% of all deaths up to 1 year from delivery were caused by drug misuse (Lewis, 2004), whilst a study in an inner-city clinic in the UK in 1999 found that 16% of women had taken 1 or more illicit substances (Sherwood et al, 1999). Cannabis use amongst pregnant women has been estimated at 8.5% to 14.5% at 12 weeks gestation (Sherwood et al, 1999; Farkas et al, 1995). In Glasgow, meconium analysis found that 15% of mothers had used cannabis in the second or third trimester (Williamson et al, 2003). Opiate use has been reported as 2% (Crome and Kumar, 2007). Use of cocaine is reported to be less than 1.1% (Williamson et al, 2007, Sherwood et al, 1999, Farkas et al, 1995). Of a cohort of pregnant substance misusers in Liverpool, 66.8% were using heroin, 33.2% cocaine and 11.3% benzodiazepines (Pinto et al, 2010). There is a lack of data on use of prescription or OTC medications during pregnancy. Also lacking are data on volatile substance use. In Wales, it has been estimated that 17,500 children and young people live in families affected by parental drug misuse (Home Office, 2003). Overall, it is estimated that one third of child care social work cases involve parental substance misuse. Although specific data on pregnant women are not available, it has also been suggested that anabolic steroid use amongst females is increasing (WG, 2008). Logically, therefore, this is likely to affect some women who become pregnant. 2.3.2 Drug misuse during pregnancy in other countries In the USA, 4.3% to 5.5% of pregnant women aged 15 to 44 were found to have used illicit drugs during pregnancy (Slutsker et al, 1993; Shankaran et al, 2007). However, amongst pregnant 15 to 17 year olds only, this increased to 15.5% (SAMHSA, 2006). Illicit drug use in Australia is reported as 6% (AIHW, 2004). Cannabis use during pregnancy has been suggested to range from 1.8% to 27% (Buchi et al, 2003; Williamson et al, 2003; Bell and Lau, 1995). In the US, opiate use has been estimated at 1.6% to 7.2%, with cocaine use ranging from 1.1% to 9.5% (Crome and Kumar, 2007, NIDA, 1996; Lester Date: 6 September 2012 Version: 0b Page: 14 of 46 Public Health Wales Early years pathfinder project Substance misuse (alcohol and drugs) et al, 2001). Cocaine use has also be suggested to be 49 times more likely to be associated with use of other drugs (Lester, 1996). In a US study of pregnant trauma clinic patients (n=188), 37 tested positive for intoxicants; 16 positive tests involved two or more intoxicants, with four involving three or more. Alcohol accounted for just four cases, with opiates (n=15), cannabis (n=12), cocaine (n=6) and benzodiazepines (n=6) also detected (Patteson et al, 2007). 2.4 Outcomes of alcohol misuse during pregnancy and EY 2.4.1 Pre-pregnancy, pre-pregnancy recognition, pregnancy The primary outcome of alcohol misuse during pregnancy and EY may be the pregnancy itself; binge drinking is commonly associated with unprotected sex and unplanned pregnancy and often then continues until the pregnancy is recognised (Nulman et al, 2004). Miscarriage is often highlighted as a risk associated with alcohol consumption during pregnancy; risk increased by 46% in women who drink weekly (OR 1.46, 95%CI 1.16 to 1.85), by 64% in those who drink more than 14 units per week (OR 1.64, 95%CI 1.09 to 2.47) and by 3.8 times in women who drink daily (OR 3.80, 95%CI 1.28 to 11.30; Maconochie et al, 2007). However, a systematic review has also found no conclusive evidence of effect (Henderson et al, 2006). Brain and central nervous system (CNS) impairment and IUGR have also been associated with alcohol consumption during pregnancy (BMA, 2007; Shankaran et al, 2007). Pre-term labour is associated with high levels of alcohol consumption in early and late pregnancy and low to moderate levels associated with an increased risk of still birth (BMA, 2007). Based on this information, however, it is therefore logical to infer that it is preferable to drink more alcohol than less. These serious consequences of alcohol consumption during pregnancy are complicated by the fact that women who misuse substances are known to have poorer obstetric and neonatal outcomes, along with late booking and poor attendance for antenatal care (NICE, 2011). However, clear, robust interventions that can improve attendance and outcomes have not yet been identified. Date: 6 September 2012 Version: 0b Page: 15 of 46 Public Health Wales 2.4.2 Early years pathfinder project Substance misuse (alcohol and drugs) Early Years – ‘regular’ alcohol consumption FASD are a series of preventable mental and physical birth defects resulting from maternal alcohol consumption during pregnancy (BMA, 2007). In the neonate, these may include facial deformities, physical and emotional developmental problems, memory and attention deficits and a variety of cognitive and behavioural problems (BMA, 2007). There is also the potential for mental illness and alcohol and drug addiction (BMA, 2007). The term FASD covers a range of disorders, from Fetal Alcohol Syndrome (FAS) to Partial FAS (PFAS), Alcohol related birth defects (ARBD) and Alcohol related neuro-developmental disorders (ARND). In the USA, FASD is estimated to cost an additional $500,000 per case over a 20 year period, with lifetime costs estimated at $2M (BMA, 2007). FAS is regarded by some as the leading cause of non-genetic intellectual disability in the Western World (BMA, 2007). However, the evidence in relation to incidence in the UK is poor, England reported 128 cases in 2002/3, Scotland 2 cases, with no data available in either Wales or Northern Ireland (BMA, 2007). Although data collection may have improved since then, significant changes seem unlikely. Estimates suggest that in Western countries up to 9 per 1000 live births will be affected by FAS, PFAS or ARND (BMA, 2007), however, it has also been suggested that the incidence in Europe is 0.4 per 1000 live births (Abel, 1998). In the USA, FAS incidence has been estimated at 0.2 to 2.0 cases per 1000 live births (CDC, 2004). In 2007, the BMA reported that the existence of FAS is still debated in the UK (BMA, 2007) and there is no good reason to believe that this position has changed significantly since then. In Canada, the USA, New Zealand and Australia, FAS is a data item in the National Paediatric Surveillance Units, but neither FAS, nor FASD are currently included in the British Paediatric Surveillance Unit (BPSU). In 2007, the BMA called for FAS data to be routinely collected and extended to the full range of FASD in order to accurately determine incidence. There are other EY outcomes associated with alcohol consumption during pregnancy; there is evidence to suggest that pre-natal alcohol exposure is associated with increased risk of Sudden Infant Death Syndrome (SIDS) and acute myeloid leukaemia (Kalin et al, 2010; BMA, 2007). 2.4.3 Early years – binge drinking The effects of binge drinking have been suggested to include decreases in birth weight and length (Shankaran et al, 2007), however, it has also Date: 6 September 2012 Version: 0b Page: 16 of 46 Public Health Wales Early years pathfinder project Substance misuse (alcohol and drugs) been found that length, head circumference and weight, up to the age of 14, are not associated with binge drinking (Sampson et al, 1994). Binge drinking (defined as 10 or more units on a single occasion) has been associated with more birth abnormalities, especially where the mother also smoked 10 or more cigarettes per day (Bell and Lumley, 1989). One study of development found that at 18 and 36 months there were no significant differences between children of mothers who binged and those who did not (Olsen, 1994, Nulman et al, 2004). A much longer term follow-up (14 years) by the Seattle Longitudinal Prospective Study on Alcohol and Pregnancy (Streissguth et al, 1983, Streissguth et al, 1989, Streissguth et al, 1990) found significantly more learning problems and poorer performance, as assessed by both parents and teachers, in children of binge drinking mothers. Neonatal mortality in pregnancies complicated by heavy alcohol intake is estimated as 18% (Kuczkowski, 2005). 2.4.4 Conclusions There is a link between alcohol consumption and complications or problems during both pregnancy and EY. However, there is a lack of clear data on outcomes associated with a given level of consumption. On this basis, the application of the precautionary principle and guidance not to drink at all during pregnancy is only appropriate. However, there are no consistent findings of adverse effects with low consumption of alcohol or occasional binge drinking. Lack of consistent guidelines, agreed standard drinks and poor understanding throughout the population of consumption levels means that obtaining a clear understanding of harmful consumption of alcohol during pregnancy and actual consumption of alcohol during pregnancy is very difficult. These issues make it not unrealistic to imagine that it will never be possible to clearly define the dose:response relationship between alcohol consumption and pregnancy outcomes. In addition, international variations mean that identification of robust interventions to tackle the problem is also likely to be very difficult. Date: 6 September 2012 Version: 0b Page: 17 of 46 Public Health Wales Early years pathfinder project Substance misuse (alcohol and drugs) 2.5 Outcomes of substance misuse during pregnancy and early years 2.5.1 Pre-pregnancy, pre-pregnancy recognition, pregnancy As stated previously, substance misuse generally is associated with fewer pre-natal visits (Shankaran et al, 2007). Cocaine users have been found to have a higher risk of complications such as syphilis, gonorrhoea and hepatitis, as well as psychiatric, nervous and emotional disorders, and placental abruption (Shankaran et al, 2007). Miscarriage, prematurity, still birth and IUGR have also been linked to cocaine use (Frost et al, 2011). Amphetamine exposure during pregnancy has been associated with cardiac anomalies, cleft lip and palate, biliary atresia, IUGR, fetal demise, cerebral haemorrhage, fetal distress and placental abruption (Kuczkowski and Benumof, 2003). Opioid use has indirect effects linked to maternal malnutrition or infection and direct effects on the fetus including transplacental opioid transfer, IUGR and fetal distress (Kuczkowski, 2003; Kuczkowski, 2003b; Fajemirokun-Odudeyi et al, 2006). Other complications include third trimester bleeding, placental abruption, LBW and still birth (Frost et al, 2011). The precise effects of cannabis on pregnancy are difficult to establish because of the tendency for it to be used in combination with tobacco, alcohol and cocaine (Kuczkowski, 2004). However, decreased uteroplacental perfusion and IUGR seem likely (Kuczkowski, 2007), there is also a suggestion that it increases the risk of pre-term birth (Bada et al, 2005; Wright et al, 1998; Kliegman et al, 1994; Shiono et al, 1995; Burns et al, 2006). Perinatal substance abuse is also an important risk factor for trauma during pregnancy and may complicate outcomes associated with other causes of trauma (Patteson et al, 2007). A US study of 160 pregnant women treated in an emergency department (ED) following a road traffic crash (RTC) tested 82 for intoxicants (51%) and found that 37 (45% of tested) were positive, including 27 who were driving. Seat belt use by the intoxicated group was significantly lower (p=0.015) than the group who were not intoxicated (Patteson et al, 2007). There were also 28 non-RTC trauma patients, of which 11 were tested for intoxicants and 8 were positive; these women had suffered falls (n=3), assault (n=2), gunshot (n=1), bicycle crash (n=1) and pedestrian injury (n=1) (Patteson et al, 2007). Date: 6 September 2012 Version: 0b Page: 18 of 46 Public Health Wales 2.5.2 Early years pathfinder project Substance misuse (alcohol and drugs) Early years Cocaine use has been associated with risk of premature birth, LBW and smaller birth length and head circumference, but not with congenital abnormalities (Shankaran et al, 2007). Heavy cocaine use has been found to increase risk of subependymal haemorrhage by 3.89 times (95%CI 1.45 to 10.35; Frank et al, 1999). Other effects of cocaine use in the neonate include CNS symptoms, autonomic nervous system (ANS) symptoms and infections, as well as increased child protection referrals and less breast feeding (Shankaran et al, 2007). Opiates have been found to have a significant negative effect on birth weight (Shankaran et al, 2007), along with problems for the neonate of prematurity, opiate withdrawal, growth aberrations, microcephaly and neurobehavioural abnormalities (Dattel, 1990). The use of cannabis has not been found to be linked to teratogenicity, but is associated with LBW and delayed cognitive development (Kuczkowski, 2007). Maternal complications of cocaine use include placental abruption, uterine rupture, cardiac dysrhythmias, hepatic rupture, cerebral ischemia / infarction and death (Dombrowski et al, 1991; Kuczkowski, 2003c; Mishra et al, 1995, Buehler, 1995, Iriye et al, 1994, Lampley et al, 1996, Moen et al, 1993). 2.5.3 Conclusions Much of the literature that is available around drug misuse relates only to illegal recreational drugs and only a subset of those. The data that are available tend to reflect drug problems and outcomes that are common in the USA and it is difficult to determine the extent to which these are relevant in Wales. There is a lack of data on the outcomes associated with misuse of prescription or OTC medications during pregnancy. There is also a lack of information around volatile substance use and the implications for pregnancy and EY. Date: 6 September 2012 Version: 0b Page: 19 of 46 Public Health Wales 2.6 Early years pathfinder project Substance misuse (alcohol and drugs) Policy context The key policy document relating to substance misuse in Wales is “Working Together to Reduce Harm: The substance misuse strategy for Wales 2008-2018.” (WG, 2008). This strategy has four key aims:1) Reducing the harm to individuals (particularly children and young people), their families and wider communities from the misuse of drugs and alcohol, whilst not stigmatising substance misuse. 2) Improving the availability and quality of education, prevention and treatment services and related support, with greater priority given than under the previous strategy to those related to alcohol. 3) Making better use of resources – supporting evidence based decision making, improving treatment outcomes, developing the skills base of partners and service providers by giving a greater focus to workforce development and joining up agencies and services more effectively in line with ‘Making the connections’. 4) Embedding the core Welsh Assembly Government values of sustainability, equality and diversity, support for the Welsh language and developing user focused services and a rights basis for children and young people in both the development and delivery of the strategy. Emphasised in this document is the need to consider the distinct issues in relation to alcohol misuse and the widespread consumption of harmful amounts of alcohol by the population generally. This is a general policy document, so makes little mention of issues particular to pregnant women. The key item in relation to pregnant women is the introduction of the All Wales Maternity Record, including questions to help to identify expectant mothers with a substance misuse problem. Based on the general position of the policy, it is expected that this covers both alcohol and drugs, but from the information given it is not explicitly clear that that is the case. What this document does not cover are issues around alcohol advertising and promotion, pricing and taxation, all of which are key policy issues that are reserved to the UK Government at Westminster. National Screening Committee (2011) has also examined the issue of alcohol and concluded that it could not recommend screening in relation to alcohol misuse. This position statement did not make any specific consideration of pregnant women. This conclusion is due to be reviewed in 2014. Date: 6 September 2012 Version: 0b Page: 20 of 46 Public Health Wales 3 Early years pathfinder project Substance misuse (alcohol and drugs) Epidemiology Obtaining good quality information on the prevalence of substance misuse during pregnancy amongst women, and on the incidence of harmful outcomes, in Wales and the UK, is difficult. Data collection is difficult, with a reluctance of staff to ask and women to provide information around substance misuse. In addition, there are often problems with diagnosis of disorders associated with substance misuse; FAS diagnosis at birth is rare and usually occurs later in childhood (BMA, 2007). In terms of FAS, this provides some explanation as to why the incidence, both in the UK and internationally, is not clear. The following section serves mainly to highlight the fact that the data that are available are of questionable quality and that the incidence of pregnancy and EY harm associated with substance misuse is not clear. 3.1 Patient Episode Database Wales – PEDW PEDW collates information on in-patient (IP) admissions in Welsh hospitals and by Welsh residents. These data include IP treatment for foetus’ and newborn babies affected by maternal use of substances. In relation to substance misuse and impact upon the foetus and newborn, records relating to the following ICD 10 codes, listed as the primary diagnosis, were extracted:P04.3 Foetus and newborn affected by maternal use of alcohol P04.4 Foetus and newborn affected by maternal use of drugs of addiction P04.9 Foetus and newborn affected by maternal noxious influence, unspecified P96.1 Foetal withdrawal symptoms from maternal use of drugs of addiction Q86.0 Foetal alcohol syndrome The data presented here relate to conditions. IP admissions associated with these Data were available annually (April 1 to March 31) from 1999 onwards, however, in 2005/06 a new ‘definition’ was applied to PEDW and the data from this period onwards are subject to this change. Date: 6 September 2012 Version: 0b Page: 21 of 46 Public Health Wales 3.1.1 Early years pathfinder project Substance misuse (alcohol and drugs) P04.3, P04.4, P04.9 Reported admissions for foetal and newborns affected by maternal use of substances suggest that the numbers of cases are very small (Table 2). However, given the profile of alcohol related harm generally and during pregnancy, and the issues of coding and diagnosis highlighted above, it seems unlikely that this is a true reflection of incidence. Table 2:- Admissions of Welsh residents with primary diagnoses P04.3, P04.4 and P04.9 ICD 10 code P04.3 Time period 1999 to 2005 2005 to 2011 1999 to 2011 (Annual average) 1999 to 2011 P04.4 P04.9 n 6 <5 <5 Bed days 69 17 to 108 (annual 3 yr average range) <5 However, analysis of P04.4 only, at any diagnostic position, suggests that, although still small, there are considerably more cases than indicated by primary diagnosis analysis alone (Table 3). Table 3:- Admissions of Welsh residents with any diagnoses P04.4 2006 19 3.1.2 2007 16 2008 11 2009 14 2010 8 2011 13 P96.1 – withdrawal from drugs of addiction Based on three year rolling average data there is a clear trend of increasing admissions and numbers of bed days associated with foetal withdrawal symptoms (Figure 1), rising from an annual average of 9 admissions and 136 bed days in 1999/02 to 57 admissions and 818 bed days annually between 2008 and 2011. However, it seems reasonable to suggest that these are a lower estimate of the true numbers of admissions. Figure 1:- Admissions associated with foetal withdrawal symptoms from maternal use of drugs of addiction Admissions 50 40 30 20 10 0 Date: 6 September 2012 900 800 700 600 500 400 Bed days 60 300 Admissions Bed Days 200 100 0 Version: 0b Page: 22 of 46 Public Health Wales 3.1.3 Early years pathfinder project Substance misuse (alcohol and drugs) Q86 – foetal alcohol syndrome There were 7 IP admissions associated with FASD between 1999 and 2011. However, data available elsewhere in Wales suggest that the number diagnosed in a single year was far higher (n=53, 2009; Botchway, 2012). This may be associated with delay in diagnosis and the 2009 figure may reflect catch-up in diagnosis of FAS, particularly as awareness of the condition increases. As stated above, estimates suggest that the number of live births affected by FAS ranges from 0.2 and 2.0 to 9.0 per 1000 live births (BMA, 2007; CDC, 2004). Data from the Public Health Wales Observatory indicate that in 2007, in a population of 579,100 women aged between 15 and 44, there were 34,398 live births2. Based on these data, a range of estimates of cases of FAS in Wales, per year, can be calculated. At an incidence of 0.2, there would be 7 cases of FAS in newborns each year in Wales; an incidence of 2.0 would give 69 cases and an incidence of 9.0 would give 310 cases. 3.1.4 Combining P96.1 and Q86 – any diagnosis Combining P96.1 and Q86 in any diagnostic position again increases the numbers of cases detected, with numbers still lower than would be expected based on estimates presented in section 3.1.3 (Figure 2). Figure 2:- Admissions associated with P96.1 and Q86 – any diagnostic position Number of hospital admissions 160 140 120 100 Any mention of 80 60 Primary diagnosis 40 20 0 2006 2 2007 2008 2009 2010 2011 http://howis.wales.nhs.uk/sitesplus/922/page/36990. Accessed 24 July 2012. Date: 6 September 2012 Version: 0b Page: 23 of 46 Public Health Wales 3.2 Early years pathfinder project Substance misuse (alcohol and drugs) Infant feeding surveys To date, eight national surveys of infant feeding practices have been carried out, most recently in 2010. These surveys provide national estimates of the incidence, prevalence and duration of breast feeding, other feeding practices and the smoking and drinking behaviour of mothers before, during and after pregnancy. Data collection is carried out when babies are 6 to 10 weeks old, at 4-5 months old and at 8-9 months old. During the first stage of data collection, mothers are asked if they had drunk alcohol during the previous two years and whilst they were pregnant. Those who drank during pregnancy were asked how often they drank different types of alcohol and how much they drank, allowing the researchers to calculate the number of units consumed. Given the limitations of recall and the tendency for people to underestimate and under-report their alcohol consumption (BMA, 2007), and response bias, it seems reasonable to suggest that these data provide a lower estimate of the prevalence of drinking during pregnancy and EY. It has been suggested that survey estimates represent only 55% to 60% of the true alcohol consumption (Goddard, 2007; Catto, 2008) 3.3 Infant feeding survey - 2005 The 2005 survey3 was based on an initial sample of 19,848 mothers of babies born between August and October 2005. Questionnaires were returned by 12,290 mothers; a response rate of 62%, with 9,416 mothers completing all three surveys. The data provided in the report have been used to determine whether the differences between Wales and the UK are important. 3.3.1 Wales In Wales, in 2005, 88% of mothers reported drinking in the two years prior to becoming pregnant, with 55% stating that they drank during pregnancy. For the UK the figures were 83% (significantly fewer drinking than in Wales, difference 5.0, (95%CI 3.4 to 6.5)) and 54% respectively. Of those mothers who drank before pregnancy, 37% gave up drinking during pregnancy (34% across the UK, Wales significantly more gave up drinking, difference 3.0 (95%CI 0.7 to 5.4)), 58% cut down (61% UK, Wales significantly fewer cut down, difference 3.0, 95%CI 0.6 to 5.4)) and Infant Feeding Survey (2005). The Information Centre. NHS Health and Social Care. http://www.ic.nhs.uk/pubs/ifs2005 Accessed 10 July 2012. 3 Date: 6 September 2012 Version: 0b Page: 24 of 46 Public Health Wales Early years pathfinder project Substance misuse (alcohol and drugs) 4% did not change or drank more (4% UK, no significant difference to Wales, 95%CI -1.0 to 1.0)). Amongst mothers of 6 to 10 week olds in Wales 45% reported that they did not drink (46% UK, no significant difference, (95%CI -1.3 to 3.3), Figure 3). Almost half of mothers reported drinking up to two units per week (47% v 46% UK, no significant difference4). Figure 3:- Estimated weekly alcohol consumption by country, by mothers of 6 to 10 week olds. 100% 90% 80% 15+ units 70% 8-14 units 60% 50% 3-7 units 40% 1-2 units 30% Less than 1 unit 20% Did not drink 10% 0% England Wales Scotland NI UK However, whilst significantly more women in Wales were drinking before their pregnancy, 78% received advice on their drinking; this is compared with 73% across the UK, a significant difference, (difference 5.0, 95%CI 2.9% to 7.0%). Almost all of these women (93%) reported that their midwife was the source of this information (v 89% UK). 3.3.2 UK More generally across the UK drinking behaviour varied with social class, with managerial / professional and intermediate occupations more likely to drink both before and during pregnancy than women who had never worked (Figure 4). 4 Difference in proportions 1.0 (95%CI -1.3 to 3.3) Date: 6 September 2012 Version: 0b Page: 25 of 46 Public Health Wales Early years pathfinder project Substance misuse (alcohol and drugs) Figure 4:- Drinking behaviour before and during pregnancy by mother’s socio-economic classification (NS-SEC). % 100 90 80 70 60 50 40 30 20 10 0 Drank during pregnancy All Unclassified Never worked Routine and manual Intermediate occupations Managerial and professional Drank before pregnancy The never worked not only reported drinking less before and during pregnancy, but also were more likely to report giving up drinking ( Figure 5). However, this group were also most likely to report not changing or increasing their consumption. Whether this difference is statistically important is not clear, but it seems unlikely that it is. Figure 5:- Changes in drinking behaviour before and during pregnancy by mother’s socio-economic classification (NS-SEC). 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% No change / drank more Drank less All Unclassified Never worked Routine and manual Intermediate occupations Managerial and professional Gave up drinking Alcohol consumption was generally linked to age, with older mothers, aged 30+, being more likely to report drinking both before and during pregnancy (Figure 6). Older mothers were also less likely to give up drinking during pregnancy (Figure 7). Date: 6 September 2012 Version: 0b Page: 26 of 46 Public Health Wales Early years pathfinder project Substance misuse (alcohol and drugs) Figure 6:- Drinking behaviour before and during pregnancy by mother’s age. 100 90 80 70 60 50 40 30 20 10 0 % Drank before pregnancy All 35+ 30-34 25-29 20-24 Under 20 Drank during pregnancy Figure 7:- Changes in drinking behaviour before and during pregnancy by mother’s age. 100% 80% No change / drank more 60% Drank less 40% 20% Gave up drinking All 35+ 30-34 25-29 20-24 Under 20 0% Overall, almost three quarters of women (73%) in the UK reported being given advice on drinking during pregnancy, and the majority of these (89%) reported receiving advice from their midwife. However, whether women received advice or not, similar proportions (95% receiving advice v 94% not receiving advice) reported moderating their drinking habits. 3.4 Infant feeding survey – 2010 At the time of writing, only the early results for the IFS 2010 were available. These do not include data on alcohol consumption by women either before or during pregnancy or after giving birth. 3.5 Summary comments There is a clear lack of data on the prevalence of substance misuse during pregnancy and the incidence of harmful outcomes resulting from these behaviours. Currently available data on outcomes are at best inaccurate and at worst misleading. PEDW is no exception; it suffers similar problems to other datasets in terms of describing the outcomes associated with substance misuse and it seems unlikely that these will be resolved in the near future. Date: 6 September 2012 Version: 0b Page: 27 of 46 Public Health Wales Early years pathfinder project Substance misuse (alcohol and drugs) The IFS appears to offer more promise in terms of understanding and addressing substance misuse issues, even given that the data are likely to underestimate the prevalence of the problem and suffer a number of biases. As long as these data are understood to be a low estimate then they can be used with appropriate caution. In addition, it is difficult to see how else these data could be collected. It may also be possible to improve the quality of these data by trying to refine the questions asked so that it is easier for people to provide more accurate answers. Obviously, in the short term this may mean that trend analysis becomes impossible, but the general data quality would be improved. To understand age related profiles better it may also be useful to aim to collect data on whether this is the first or a subsequent pregnancy. It seems likely that the finding that older women are more likely to drink during pregnancy is related to this being a second or third pregnancy. This may also provide more useful data for targeting interventions. Given the quality of data currently available to the IFS, the biases and difficulties in the collection of these data, and the apparent prevalence of alcohol misuse compared with drug misuse, it would not seem appropriate to extend the data collection beyond alcohol at the moment. Finally, IFS ‘early results’ for both 2005 and 2010 do not include alcohol. Although ‘early results’ report cannot cover all aspects of the survey it is suggested that, in the future, consideration is given to including alcohol alongside smoking as a key item for ‘early results’. This omission may, unintentionally, have the effect of creating a perception that alcohol consumption during pregnancy is less problematic than smoking during pregnancy. Without better data, adequately planning and managing services to tackle these issues is almost impossible. Date: 6 September 2012 Version: 0b Page: 28 of 46 Public Health Wales Early years pathfinder project Substance misuse (alcohol and drugs) 4 Evidence of effectiveness 4.1 Introduction This section brings together the evidence on the identification of substance misuse through screening, and interventions available to reduce the harm related to substance misuse during pregnancy and EY. There are several screening tools that can be used with pregnant women to establish their substance misuse. A number of interventions have been reviewed for their effectiveness. Some interventions are individual to the patient, while others incorporate the whole family. Interventions may also be educational, psychosocial or pharmacological interventions 4.2 Methods Search strategy: Title and text search using the search terms: (substance or drug) (pregnancy or pregnant) alcohol (substance or drug) paediatr* alcohol Databases searched Cochrane, NICE, TRIP database, NHS Evidence, Pubmed Currency Databases were searched from 2006 to 12/07/2012 Search date 12th July 2012 The scope of this review was to identify evidence in relation to screening tools to identify substance misuse interventions to reduce substance misuse related harm during pregnancy and EY. Key guidelines in this area did not include detail of specific interventions appropriate to the scope of this review. Therefore the Cochrane library, TRIP database, NHS Evidence and Pubmed were searched for systematic reviews. Date: 6 September 2012 Version: 0b Page: 29 of 46 Public Health Wales Early years pathfinder project Substance misuse (alcohol and drugs) The interventions identified were grouped into 7 main areas: (1) screening (2) antenatal alcohol misuse, (3) antenatal drug misuse, (4) antenatal substance/drug misuse and alcohol misuse, (5) effect of drug misuse on children (6) FAS and (7) support for the families and carers. Although more research has been carried out in this area over the past 20 years, evidence relating specifically to the UK is sparse. Generalising in this area is difficult; much of the available evidence is from the USA where patterns of substance misuse are very different and RCTs include only small numbers of participants. In addition, confounding associated with polysubstance misuse and nicotine creates further difficulties (BAP, 2012). 4.3 Screening for substance misuse Screening tends to focus mainly on identification of alcohol misuse, but there is no consensus on the approach to take during pregnancy and no optimal screening tool available (SOGC, 2011). The SOGC approach recommends using the ALPHA tool incorporating the CAGE questionnaire to screen for maternal drug use. Toxicity testing is not recommended for universal screening, only if indicated by ALPHA / CAGE (SOGC, 2011). A systematic review of screening tools for alcohol consumption during pregnancy included five studies of seven different instruments5 (Burns et al, 2010). AUDIT-C had high sensitivity (95%) and specificity (85%) for risk drinking, as well as alcohol dependence (100%, 71%) and alcohol use disorder (96%, 71%). T_ACE (69 to 88%, 71-89%) and TWEAK (71-91%, 73-83%) also showed promise for identifying risky drinking however, their performance as standalone tools is uncertain. Raistrick et al (2006) also considered TWEAK and T-ACE, both of which are derived from CAGE and take around one minute to administer. Both tools were found to have high sensitivity and specificity and to be more effective than CAGE. TWEAK was also found to be effective in a range of socio-economically and ethnically diverse pregnant populations in the USA, as well as men and non-pregnant women. Therefore, AUDIT-C appears to have wider capacity to identify problem drinking amongst pregnant women, but TWEAK and T-ACE are also effective screening tools. TWEAK (Tolerance, Worried, Eye-opener, Amnesia, Kut down), T-ACE [Take (number of drinks), Annoyed, Cut down, Eye-opener], CAGE (Cut down, Annoyed, Guilt, Eye-opener], NET (Normal drinker, Eye-opener, Tolerance), AUDIT (Alcohol Use Disorder Identification Test), AUDIT-C (AUDIT-consumption) and SMAST (Short Michigan Alcohol Screening Test). 5 Date: 6 September 2012 Version: 0b Page: 30 of 46 Public Health Wales 4.4 Early years pathfinder project Substance misuse (alcohol and drugs) Interventions for alcohol misuse Lui et al (2008) sought studies of psychological interventions for women who were enrolled in alcohol treatment during pregnancy and found no articles that met the inclusion criteria. Smith et al (2009) carried out a similar review of pharmacological interventions for pregnant women and found no articles that met the inclusion criteria. In terms of preventing, diagnosing and managing FASD, primary prevention including warning labels on bottles, education and an alcohol ban have been evaluated, but in a very small number of studies of poor to fair quality (Elliot et al, 2008). A review of secondary prevention (one on one, education based) yielded similar results, as did the review of tertiary prevention (Elliot et al, 2008). 4.5 Interventions for drug misuse during pregnancy In terms of managing pregnant drug misusers, psychosocial interventions based on contingency management were found to have some effect on reducing drug use, but, because of low numbers, no effect on obstetric or neonatal outcomes could be detected (Terplan and Lui, 2008). There was insufficient evidence available to support the use of motivational interviewing (Terplan and Lui, 2008). Pharmacological intervention (maintenance agonists) for opiate dependent pregnant women showed no significant differences between the drugs compared for both mother and child outcomes (Minozzi et al, 2009). 4.6 Interventions for substance misuse during pregnancy Milligan et al (2010) reviewed integrated programmes addressing a woman’s physical, social and mental health needs, as well as children’s needs and found moderate and statistically significant effect on maternal substance use. However, integrated programmes were no more effective than non-integrated programmes. Home visits by a variety of professional and lay women were found to have no effect on a whole variety of mother and child outcomes, including illicit drug use (3 studies, n=384, risk ratio (RR) 1.05, (95%CI 0.89 to 1.24), continued alcohol use (3 studies, n=379; RR 1.18, 95% CI 0.96 to 1.46), enrolment in a drug treatment program (2 studies, n=211; RR 0.45, 95% CI 0.10 to 1.94), not breastfeeding at six months (2 studies, n=260; RR 0.95, 95% CI 0.83 to 1.10), incomplete six-month infant vaccination schedule (2 studies, n=260; RR 1.09, 95% CI 0.91 to 1.32; Date: 6 September 2012 Version: 0b Page: 31 of 46 Public Health Wales Early years pathfinder project Substance misuse (alcohol and drugs) Turnbull et al, 2012). Therefore, there is insufficient evidence to recommend the routine use of home visits for pregnant or postpartum women with a drug or alcohol problem. A review of antenatal care programme interventions including group antenatal care, managed care, nurse home visits and telephone support found no evidence relating to the effect of antenatal care interventions on mortality from SIDS/SUDI and limited evidence relating to effect on congenital anomalies (NPEU, 2009). There was insufficient evidence of adequate quality to conclude that interventions involving alternative models of organising or delivering antenatal care reduce infant mortality or pre-term birth. There were some promising interventions in relation to pre-term birth but further robust evaluation of these is needed (NPEU, 2009). 4.7 Interventions for FAS FAS/D interventions include pharmacological, educational, social skills and communication and behavioural, but there is limited evidence for these interventions being effective in children with FAS/D (Peadon et al, 2009). A wider review of interventions with children and youth with FAS/D, including psychostimulant medications (methyphenidate, pemoline and dextroamphetamine) and Cognitive Control Therapy found limited evidence of effectiveness (Premji et al, 2006). Date: 6 September 2012 Version: 0b Page: 32 of 46 Public Health Wales Early years pathfinder project Substance misuse (alcohol and drugs) 5 Current service provision 5.1 Antenatal care guidelines NICE (2010b) identify substance misusers as one of the four groups of pregnant women with complex social factors and recommends appropriate standards of care for this population. These cover: Recording and calculating the number of women presenting for antenatal care with complex social factors. Recording attendances for booking at 10, 12 and 20 weeks, along with actual attendance and experiences of mother or baby of significant morbidity or mortality. Monitoring satisfaction with services to guide service development. Co-ordinated care plans supported by multi-agency needs assessment; health, social care and third sector agencies, and including opiate replacement therapy information, co-location of services and provision of information about services provided by other agencies. The need to be mindful of the right to confidentiality, but also to raise with the woman that her information may need to be shared with other agencies. Providing support to obtaining a booking appointment and, if necessary, the opportunity to discuss sensitive issues in a confidential environment. Providing training to health care professionals to understand the social and psychological needs of women who misuse substances and in how to communicate sensitively with these women. Addressing fears that may exist in relation to the involvement of children’s services and the potential removal of the child and addressing feelings of guilt around substance misuse and the potential effects on the baby. Offering a ‘named’ midwife or doctor with specialised knowledge and experience of the care of pregnant women who misuse substances, and, where possible, provided with a direct dial number by which to contact this person. Once substance misuse has been disclosed, referral to an appropriate programme should be offered, along with any additional services that may be relevant. Reminders to attend clinic appointments should be sent by a variety of methods, including sms, and offers to provide transport to appointments made. Information should also be offered on the potential effects of the substance on the unborn baby and what to expect once the baby is born. Date: 6 September 2012 Version: 0b Page: 33 of 46 Public Health Wales 5.2 Early years pathfinder project Substance misuse (alcohol and drugs) National provision Working Together to Reduce Harm has four areas for action, one of which is to support families to reduce the risk of harm to children and adults as a consequence of substance misuse by a family member. As a result of this, five Early Parental Intervention Pilot projects have been set up in Flintshire, Newport, Merthyr Tydfil, Blaenau Gwent and Bridgend. These projects aim to o Reduce the impact o Enable substance effective parenting o Encourage parents of substance misuse on parenting capacity; misusing adults to develop positive and skills; and to develop greater self-determination. 5.3 Current service provision by Health Board 5.3.1 Aneurin Bevan Health Board / Gwent Area Planning Board Gwent Substance Misuse Area Planning Board (APB) has established an Alcohol and Pregnancy Task and Finish Group. The purpose of this group is to make recommendations for a regional approach to promoting and addressing harms from drinking alcohol during pregnancy, because of concern over a lack of clear national guidance around safe drinking levels and the confusion that this may cause and the lack of awareness of FAS / FASD. Once developed, the regional guidelines will be circulated and midwives trained to deliver ABI and to improve recognition and reporting of alcohol use and related conditions affecting pregnancy and the newborn. The APB has also developed a Prevention Advisory Group, with alcohol and pregnancy one of the four priority areas, and a proposal for action currently under development. A regional alcohol conference is planned for October, with a key aim being to promote evidence of effectiveness, including in terms of services for pregnant women and young children. The Director of Public Health’s annual report highlights the need to address alcohol use during pregnancy. There are also a number of substance misuse services in place across the region, with specialist or complex issue support from the Gwent Substance Misuse Specialist Service. A lead midwife for substance misuse is also in post and all midwives will be trained to deliver ABI in September 2012. In addition, Barnardo’s offer an Integrated Family Support Service, currently in Newport only, but due to be extended, to provide a ‘whole Date: 6 September 2012 Version: 0b Page: 34 of 46 Public Health Wales Early years pathfinder project Substance misuse (alcohol and drugs) family’ response to families with complex needs through a multi agency team of practitioners. 5.3.2 Betsi Cadwaladr Health Board In the Betsi Cadwaladr Health Board area a specialist midwifery liaison service has been developed to support pregnant women who misuse substances. This service provides both education and guidance for those who may be treating pregnant substance misusers, as well direct clinical care. The delivery of ABI training in the area specifically includes health visitors with a view to targeting the mothers of young children, although there is a lack of evidence in relation to the effect of ABI in this area. Strengthening Families and Families First programmes are also active in the area. In North Wales, sexual health and substance misuse services are closely linked and a substance misuse midwife is in post, working closely with the harm reduction team. 5.3.3 Powys Health Board Powys Health Board area has no specific services in place to address this issue, but all midwives work with and refer to the substance misuse team Kaleidoscope. 5.3.4 Cardiff and Vale Health Board Cardiff and Vale also has a specialist substance misuse midwife, as well as the Cardiff Young Persons Substance Misuse Task Group; a multi agency group taking forward children and young people’s (CYP) actions from the CYP plan and Substance Misuse Action Team (SMAT) Plan. Both Cardiff and the Vale offer family support interventions in cases where there is parental substance misuse and Integrated Family Support Services are offered where there are safeguarding risks. Cardiff Drug and Alcohol Team also offer guidance, counselling and care for substance misusers and their families. Strengthening Families is also delivered in Cardiff to prevent substance misuse. 5.3.5 Cwm Taf Health Board In Cwm Taf HB are due to upgrade to version 2 of the All Wales maternity record in September 2012. This will include Cwm Taf specific additions that cover detailed drug misuse information of both mother and father. This information is then recorded in the maternity hand held records and the in-house maternity database. These data can be updated throughout pregnancy and post delivery. Date: 6 September 2012 Version: 0b Page: 35 of 46 Public Health Wales Early years pathfinder project Substance misuse (alcohol and drugs) Disclosure of substance misuse during booking or at any other time during pregnancy is followed up with requests for information on any other agencies involved and key worker details. If no agencies are involved relevant referrals are offered. Disclosure also triggers use of the substance misuse pathway which includes 22 week risk assessment for mother and / or partner to inform the safeguarding assessment. The risk assessment tool assesses risks and protective factors, identifies key agencies already involved and highlights appropriate referrals and was developed by a multi agency collaboration following serious case review health recommendations. It is a generic tool used by all relevant agencies within the Health Board (e.g. Families First, Taff Ely Drug Support, Drugaid). A copy of the completed risk assessment is sent to each key worker in each agency involved in parent’s care. The pathway is followed through to the post-natal period and includes consultant led care, named midwife as care co-ordinator, and close liaison with other appropriate services. Pre-birth plans are completed for every case, detailing care plans following delivery and discharge arrangements. Post natal care is in the community with the community midwife co-ordinating care for up to 28 days. Each local authority area in Cwm Taf also has its own substance misuse action plan, as well as Integrated Family Support Services. Strengthening Families is also available in Merthyr Tydfil. A project to map substance misuse education in school settings is also underway, linking to sexual health. 5.3.6 Hywel Dda Health Board Hywel Dda has a specialist midwife to work with pregnant women identified as substance misusers. The primary aim of this role is to ensure that all safeguarding issues are fully considered. This post has been in place for 18 months and currently covers Carmarthenshire and Pembrokeshire. Activity data is available, but no proper evaluation has been carried out. There are no other evaluated maternal and early years schemes in the area. Both Pembrokeshire and Ceredigion have Substance Misuse Prevention Plans. Date: 6 September 2012 Version: 0b Page: 36 of 46 Public Health Wales 5.3.7 Early years pathfinder project Substance misuse (alcohol and drugs) Abertawe Bro Morgannwg Health Board Healthy Schools programmes in the Abertawe Bro Morgannwg area work with the substance misuse team and Strengthening Families is also available. A pilot project, Children and Adults Together (CATS), is also underway to involve parents in substance misuse work with children. Date: 6 September 2012 Version: 0b Page: 37 of 46 Public Health Wales 6 Early years pathfinder project Substance misuse (alcohol and drugs) Conclusions There are obviously significant problems associated with substance misuse during pregnancy, but there are many difficulties with determining the response needed to these problems, mainly because of a lack of knowledge and understanding. 1. The dose: response relationship between alcohol and negative outcomes is not clear. 2. The links between drug misuse and negative outcomes is not clear. There is a particular lack of controlling for socio-economic confounders in analysis. 3. The prevalence of substance misuse during pregnancy is not clear, but given the prevalence of excess alcohol consumption in the population, it is likely that many women are consuming harmful amounts of alcohol pre-pregnancy and pre-pregnancy recognition. 4. There is some evidence of effectiveness for screening tools to detect substance misuse in pregnant women, but no good evidence for interventions to address the issue. 5. The services that are currently in place appear to focus on drug misuse and the associated safeguarding issues. Date: 6 September 2012 Version: 0b Page: 38 of 46 Public Health Wales 7 Early years pathfinder project Substance misuse (alcohol and drugs) Recommendations 1. All pregnant women should be given advice to moderate their drinking, but older, professional women, in particular, should be targeted. 2. To support this, all health care professionals who are in contact with women who are either pregnant or thinking of becoming pregnant should be trained to deliver alcohol brief interventions (ABI). However, given the lack of good quality evidence in this area generally, robust evaluation of such an approach would need to be carried out to inform the evidence base. 3. In addition, advice is both easier to give and act upon when the message is consistent. Constant changes to advice in relation to alcohol are unhelpful, cause confusion and can also result in a lack of trust and regard for future messages, not only in relation to alcohol, but also for other health issues. Significant efforts are therefore needed to establish an appropriate guideline, with a regular time table for review. 4. Collection of more accurate data around substance misuse prevalence and pregnancy outcomes is needed, but careful consideration of how to collect these data accurately is also essential. 7.1 Update on recommendations To support the delivery of recommendation 2, the Public Health Wales programme to reduce alcohol related harm has been delivering alcohol brief intervention (ABI) training to midwives. Delivery is influenced by Health Board priorities; to date, just 13.2% of Welsh midwives have been trained to deliver ABI (table 4). Cardiff and the Vale UHB (32.0%) and Hywel Dda HB (25.4%) have trained more midwives than any other HB, but significant efforts are now needed to improve coverage. Table 4:- Training of midwives to deliver ABI. Total Midwives Total Trained Midwives Hywel Dda 50 197 Betsi 22 282 Aneurin 39 285 ABMU 2 285 Cardiff and Vale 87 272 Powys 0 48 Cwm Taf 0 150 WALES 200 1519 Note: All Powys midwives to be trained in September 2013 Date: 6 September 2012 Version: 0b % trained 25.4% 7.8% 13.7% 0.7% 32.0% 0.0% 0.0% 13.2% Page: 39 of 46 Public Health Wales Early years pathfinder project Substance misuse (alcohol and drugs) To support this, the PHW alcohol related harm team are also aiming to train staff in fertility clinics to deliver ABI. Date: 6 September 2012 Version: 0b Page: 40 of 46 Public Health Wales 8 Early years pathfinder project Substance misuse (alcohol and drugs) References Abel, E.L. (1998). Fetal alcohol syndrome: the American paradox. Alcohol Alcoholism, 33, 195-201. AIHW (2004). 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