Mukherjee, R, Cook, PA, Fleming, KM and Norgate, SH
What can be done to lessen morbidity associated with fetal alcohol spectrum
disorders?
http://researchonline.ljmu.ac.uk/id/eprint/4824/
Article
LJMU has developed LJMU Research Online for users to access the research output of the
University more effectively. Copyright © and Moral Rights for the papers on this site are retained by
the individual authors and/or other copyright owners. Users may download and/or print one copy of
any article(s) in LJMU Research Online to facilitate their private study or for non-commercial research.
You may not engage in further distribution of the material or use it for any profit-making activities or
any commercial gain.
The version presented here may differ from the published version or from the version of the record.
Please see the repository URL above for details on accessing the published version and note that
access may require a subscription.
For more information please contact researchonline@ljmu.ac.uk
http://researchonline.ljmu.ac.uk/
Citation (please note it is advisable to refer to the publisher’s version if you
intend to cite from this work)
Mukherjee, R, Cook, PA, Fleming, KM and Norgate, SH (2016) What can be
done to lessen morbidity associated with fetal alcohol spectrum disorders?
Archives of Disease in Childhood.. ISSN 1468-2044
LJMU Research Online
"What can be done to lessen morbidity associated with Fetal Alcohol Spectrum Disorders?"
Raja Mukherjee PhD 1,2 * : Consultant Psychiatrist
Penny A. Cook 2
Kate M. Fleming3
Sarah H. Norgate 2
word count 3479
*Raja.mukherjee@sabp.nhs.uk
1:FASD Specialist behaviour clinic, Surrey and Borders partnership NHS Foundation trust, Brackets
Resource Centre 116-118 Station Rd East, Oxted RH80QA
2: University of Salford, School of Health Sciences, Allerton Building, Salford M6 6PU
3: Public Health Institute, Liverpool John Moores University, Henry Cotton Building, Liverpool L3
2ET
Declaration if interest: Nil
Abstract
Fetal alcohol Syndrome (FAS) and its wider spectrum of presentation Fetal Alcohol Spectrum
Disorders (FASD) represent a range of disorders that are sometimes difficult to recognise as they
may present in a way that overlaps with other conditions. This makes identification and recognition
challenging, which increases the burden associated with the disorder. When considering the
reduction in morbidity, both prevention of exposure to alcohol by the fetus but also early
identification of cases is required. This selective review seeks to highlight some of the complexities
involved as well as highlighting the challenges. By considering populations particularly at risk to
exploring the reality of alcohol risk it will seek to offer some solutions to begin the process of
change.
Introduction
Prenatal alcohol exposure on the developing fetus has been demonstrated now for over 40 years to
have both direct and indirect developmental impacts across the human lifespan
1
.Yet because such
developmental outcomes and pathways have not yet been systematically attributed to the effects of
prenatal alcohol on the fetus, such risks of morbidity largely tend to remain unrecognised and
therefore neglected in intervention design and development, public health education,
multiprofessional practice and service provision.
Fetal Alcohol Syndrome (FAS) is the most easily recognised part of the spectrum of presentation.
This however only represents a small proportion of the range of difficulties seen. Far more common
are the neurological deficits, but due to timing of alcohol exposure the facial and physical
characteristics are less evident. According to DSM V framework (APA, 2013), the term
Neurodevelopmental Disorder associated with Prenatal Alcohol Exposure (ND-PAE)
2
has been
proposed. This is a term that has yet to have wider utilisation, but increasing research is being
conducted in order to identify and establish the utility of this diagnosis, with the term Fetal Alcohol
Spectrum Disorders (FASD) more widely used at present. Further, the relationship with prenatal
alcohol exposure and wider neurodevelopmental outcomes such as Autism and ADHD, whilst
conceptualised, continues to be debated in terms of the nature of the relationship
3 4
. This lack of
easy recognition, a lack of consistent diagnotic guidance and uncertain impact of prenatal alcohol
between individuals all combine to lead to a high level of public health risk. Actions to reduce the
morbidity associated with FAS include prevention/reduction of alcohol exposure during pregnancy
to prevent damage in the first place, while lessening the morbidity for those with FASD also requires
timely identification of cases and appropriate long term support for affected individuals.
When considering the relationship of FASD to morbidity, which will include prevention of the
condition alongside the individual and societal impact of the disorder, wider factors also have to be
considered. Evidence from a 30-year cohort follow-up of diagnosed individuals identified significant
levels of mental health problems, criminalisation, sexual exploitation as well as addictions in affected
individuals
1
. A recent systematic review also identified 438 different ICD10 conditions linked to
prenatal alcohol exposure
5
. This highlights the significant range of conditions that have been
attributable to the effects of alcohol on the fetus. This morbidity often goes unattributed to prenatal
alcohol therefore recognition of the impact of alcohol consumption during pregnancy is not made
5
.
In order to begin addressing some of these issues it is important to understand what level of
knowledge and information exists within both professionals and the public of FASD but also more
detailed understanding as far as possible as to the types and range of disorders that are attributable.
Studies from around the world, including studies in the UK, have identified that the level of
knowledge about FASD is limited. Increasingly people have heard of the condition but, unlike
conditions of arguably similar prevalence (e.g. autism), know little else about it. Professionals, public
and carers of individuals with FASD all highlighted that there is a lack of knowledge and
understanding broadly about FASD including appropriate care and support pathways for individuals
who are affected
6-8
. Further, for many, labels are perceived to be stigmatising leading to an
unwillingness to consider the diagnosis
7
. This in itself has an impact on accurate identification.
Ascertaining prevalence
May and Gossage
9
summarise the common methods to assess prevalence. Passive systems, which
are efficient for well recognised conditions that are easy to diagnose, are less useful for capturing
the prevalence of FASD than they are for other more recognisable conditions, because the diagnosis
is not obvious
9
. Diagnosis is dogged by difficulties, including the fact that many healthcare
professionals know little about FASD and specialist training is needed to make a diagnosis. A
diagnosis is generally made by a team of different professionals following a thorough assessment of
the child that involves a physical examination, intelligence tests, occupational and physical therapy,
and psychological, speech and neurological evaluations, as well as genetic tests to rule out genetic
causes of problems
10
. Another difficulty with obtaining a diagnosis is that the behavioural and
developmental problems typical of FASD may not emerge until a child is at primary school, and in
some cases even later in life, by which time evidence about whether the birth mother drank during
pregnancy, especially in the adopted or looked after childrens group, may be missing. This
information is crucial to make a diagnosis if the distinctive facial features seen in full-blown FAS are
not present. Another difficulty is that people with FASD often have other disorders (such as ADHD or
autism spectrum disorder), making it difficult to isolate FASD. Moreover the condition rarely leads to
a child being hospitalised, thus utilisation of hospital data sources is not reliable
11 12
. Clinic-based
studies tend to follow up women during and after pregnancy, and are prospective, but a serious
drawback with these is that FASD is diagnosed later in the child’s life
9 12
. Prevalence estimates using
active case ascertainment are considered the ‘gold standard’ and, at their best, involve screening a
cross section of the general population of children
13
. The substantial drawback to this method is the
significant cost involved in conducting a rigorous study using active case ascertainment.
A recent systematic review
13
found 48 articles with data on 166 samples, most of which (81%) were
from suspected high prevalence sub-populations, such as looked after children. Most studies were
carried out in USA, Australia, Canada and South Africa. There were no UK studies. Among the
samples based on the general population, the global prevalence of FAS was found to be 0.2% and
FASD was estimated to be 2.3%, but the estimates for individual countries varied widely. Prevalence
was highest in South Africa (FAS 5.5%; FASD 11.3%) and lowest in New Zealand (FAS 0.01%; no data
for FASD). In the only two European countries for which there there were data, the prevlance of
FASD was estimated to be 4.7% in Italy (with FAS 0.8%), while in Croatia there were no estimates for
FASD but FAS was estimated to be 1.1%. Of particular note, the study in Italy used active case
ascertainment for the whole range of FASD and revealed a substantially higher prevalence than has
previously been suspected
14
. Given that drinking levels in women of childbearing age are
substantially higher in the UK compared to Italy (7 litres of pure alcohol in 2010 compared to under 4
litres in Italy
15
), rates of prenatal exposure in the UK may be at least comparable to those elsewhere
in Europe, if not higher.
Hospital episode statistics from the UK and results of screening through a passive surveillance
approach in Scotland have identified far lower levels of reported diagnosis than would be expected
based on broader prevalence
11 16
. To date no specific prevalence study has been undertaken in the
UK.