Ascertaining risk of fetal alcohol spectrum disorder at initial health assessments for children in care

Fasd In The Uk

FASD is a group of conditions with a broad range of manifestations (Wilhoit, Scott and Simecka, 2017). Alcohol has been demonstrated to cross the placenta and have a teratogenic effect (Heller and Burd, 2014). After tobacco, alcohol is the most common teratogenic substance used in pregnancy (Forray and Foster, 2015). The severity of impact on the developing fetus varies based on total alcohol intake, pattern of drinking and the trimesters in which drinking occurs (Nykjaer et al., 2014; Oei, 2020). Exposure in the first trimester is believed to have the most significant effects (Nykjaer et al., 2014). While there is a dose-dependent response to alcohol exposure, no safe level of alcohol in pregnancy has been identified and the only way to reliably prevent FASD is complete abstinence during pregnancy (Flak et al., 2014). This is reflected in the UK Chief Medical Officer’s updated advice on low-risk drinking from 2016 (Department of Health, 2016).

Diagnosis in the UK is based on meeting the criteria set out by the SIGN 156 guidance (SIGN, 2019). FASD presentations can be divided into those with or without sentinel facial features. Diagnosis requires evidence of severe impairment in three or more neurodevelopmental areas of assessment or microcephaly in infants and young children (SIGN, 2019). In most children confirmation of PAE is required for diagnosis, except where all three sentinel facial features are present (SIGN, 2019) .There are several facial changes associated with FASD but the three measured are short palpebral fissures, smooth philtrum and thin upper lip (SIGN, 2019). These are assessed using the University of Washington FAS facial photographic analysis software and Washington lip-philtrum guides (Astley, 2011; 2013).

The estimated prevalence of alcohol use during pregnancy in the UK is 41.3% (Popova et al., 2017). It is estimated that one in every 13 people who consume alcohol during pregnancy will have a child with FASD (Lange et al., 2017). FASD prevalence in the UK general population is reported at between 6–17% based on data from Bristol, with higher incidence in certain groups (McQuire et al., 2019). Looked after children have a higher prevalence of FASD and can be regarded as being a higher risk population (Lange et al., 2013; Popova et al., 2019). Globally the prevalence of FASD in children in care is between 5.2 and 67.7 times higher than in the general population (Lange et al., 2017). An audit of community paediatrician referrals in Peterborough found that 3% of new referrals from the general population had a diagnosis of FASD while the figure for looked after children was 27% (Gregory, Reddy and Young, 2015). Of the looked after children, 34% were found to be at risk of neurodevelopmental difficulty due to prenatal substance exposure (Gregory, Reddy and Young, 2015). Time spent in residential care, in comparison with a home environment, is a risk factor for poorer behavioural outcomes for children with FASD, while being raised in a stable environment is a protective factor (Streissguth et al., 2004; Fagerlund et al., 2011).

Diagnosing FASD in looked after children poses unique challenges; in the US the missed diagnosis rate has been estimated at 86.5% (Chasnoff, Wells and King, 2015). Alcohol exposure is a key diagnostic feature and confirmation of this is essential when the child does not have sentinel facial features. A consensus meeting with UK health professionals identified one of the main barriers to FASD diagnosis as a lack of information (Mukherjee, 2011). Only one in ten affected children have facial dysmorphism (Roozen et al., 2016) which is most obvious between the ages of eight months to eight years (Alberta Medical Association, 2003). Neurodevelopmental concerns are often absent or mild at younger ages; more significant impairment may become evident at school age (SIGN, 2019). Median age at diagnosis is around seven years following extensive evaluation (Bakhireva et al., 2018).

Children with FASD can benefit from targeted social, psychological and educational interventions and diagnosis can provide access to more support both at home and in school (Reid et al., 2015; Wilhoit, Scott and Simecka, 2017). Early intervention has been shown to improve outcomes and act as a protective factor (Streissguth et al., 2004; Fagerlund et al., 2011; Currie et al., 2016). Additionally, FASD has a high burden of comorbidity and a diagnosis can aid in screening for physical and mental health problems. The most commonly affected organ is the brain but PAE can also cause congenital abnormalities in the heart, liver, kidneys, endocrine system and gastrointestinal tract (Caputo, Wood and Jabbour, 2016). Because of the difficulties in diagnosing FASD in looked after children it is important to gather as much information as possible at the point of entering care (Gregory, 2021). This audit reviewed the documentation of FASD risk in IHAs for looked after children.

Aims

To determine how often information about prenatal alcohol use was recorded.

Methods

The sample included children who received IHAs in Brighton and Hove between 1 April 2021 and 1 April 2022. A total of 115 children met this criterion. Ten children were deducted because their records were not found and a further ten because their IHA was not available, leaving a remaining sample of 95 children.

A proforma was created based on the SIGN 156 (SIGN, 2019) guidance. Patient data was anonymised.

The questions below were used to audit all IHAs in our sample:

documentation of prenatal alcohol exposure;

Documentation of future risk of developmental problems was assessed where PAE was confirmed. For this condition to be met, the possibility of future developmental problems in relation to the PAE must be mentioned, but use of the term FASD was not required. However, mentioning the possibility of developmental problems alone was not sufficient.

1. To Determine How Often Information About Prenatal Alcohol Use Was Recorded

In 61.05% of IHAs there was some documentation of PAE status; in 38.95% of cases there was no documentation of exposure.

The cases where PAE status has been documented can be subdivided into yes, no, or unknown. Of the total sample, 12.63% of cases were documented as confirmed PAE, 23.16% were documented as denied PAE and 25.26% of cases were documented as unknown PAE.

2. To Determine How Often Risk Of Future Developmental Problems Related To Prenatal Alcohol Exposure Was Recorded Where Prenatal Alcohol Exposure Was Confirmed

The total number of cases with confirmation of PAE was 12, including cases where the evidence source was not documented. Of this population, 25% had documentation of risk of future developmental problems related to PAE; 75% had no documentation of risk or any recommendations regarding follow-up in this area.

3. To Determine The Extent To Which The Age Of The Looked After Child Correlated With Prenatal Alcohol Use Documentation

A comparison was made between documentation of PAE status in children under ten years and children ten years and above. In children under ten years, 89.29% had documentation of PAE status and 10.71% had none. In children ten years and above, 20.51% had documentation of PAE status and 79.49% had none. The comparison between age groups is displayed in Figure 1.

OPEN IN VIEWER

Figure 1.

Documentation of information about prenatal alcohol exposure in different age groups.

Summary Of Conclusions

In over half of all cases the PAE status was documented. Of those at risk of developing FASD, a quarter had documentation of risk of future developmental problems due to PAE. There was a considerably higher level of documentation of PAE status in children under the age of ten compared to children aged ten years and older. This is the first audit, to our knowledge, measuring PAE and FASD risk documentation in IHAs of looked after children in the UK. As a result, there is no benchmark to compare Brighton and Hove’s Looked After Children units’ performance.

Barriers To Better Documentation

There are many barriers to obtaining information about PAE. Key sources of information are the parent, the parental health (PH) form and the maternal health file. Access to the maternal health file is often not available; it contains detailed information gathered about substance use during the pregnancy and is a valuable resource.

The PH form is given to biological parents in advance of their child’s IHA; questions about PAE are aimed at the birth parent. This form is sometimes not completed and the questions do not provide an adequate level of detail. Parents may not feel comfortable answering these personal questions and drinking alcohol in pregnancy is a sensitive issue. In a 2015 study, 72% of paediatricians surveyed believed that the condition is stigmatising (Mukherjee et al., 2015a). Survey data of the general public show that mothers of children with FASD experience more stigmatisation compared to mothers with serious mental illness, substance use disorder and jail experience (Corrigan et al., 2017). To compound that, these parents have had a child removed from their care and may believe that admitting to drinking alcohol in pregnancy will adversely affect their chances of reuniting their family. If parents do not understand why questions about PAE are being asked it may impact the response rate.

Although parents are encouraged to attend IHAs, this is not always possible, limiting the opportunity to ask about PAE. Being asked in person after rapport has been built and reasons for questions have been explained may help parents to feel comfortable enough to disclose sensitive information. This setting enables follow-up questions to build a more complete picture of alcohol use and FASD risk, and for parents to raise any developmental concerns. When parents do attend IHAs there are other people present, including the child, and they may not feel comfortable talking about alcohol use in front of them. In some cases, parents cannot be contacted, or it would be inappropriate for the parent to be present.

Correlation Between Age And Pae Documentation

The current IHA proforma includes a section for substance misuse issues. In younger children this is usually used to document parental substance use including PAE. In older children this section is often used to document their own substance use and any concerns the child may have. From the age of about ten years the assessment shifts to being led by the young person. While it is extremely important that young people are given the opportunity to discuss their own experience of substance use and seek advice, it can occur at the expense of a history of parental substance use. As diagnosis can occur at any age, any developmental difficulties should be considered in the context of prenatal substance exposures.

Recommendations

The audit led to the following five recommendations:

a dedicated section in the IHA proforma for prenatal substance exposure in addition to the current section for substance misuse issues;

There is scope for re-audit following implementation of the above recommendations using this audit as a benchmark. This could be supplemented by a survey or focus group discussion with doctors who carry out IHAs about barriers to documentation and the practicality of the recommendations.

Auditing engagement with the PH form and a survey regarding parental attitudes towards the IHA process and FASD knowledge could provide insight into gaps in information. Understanding the parents’ perspective could inform interventions to improve engagement. A 2015 questionnaire highlighted a superficial level of knowledge about FASD by the general public in the UK and the need for information to be personally relevant to be most effective (Mukherjee et al., 2015b).