A systematic review and assessment of the social, medical, economic
and ethical aspects.
The main objective of this report is to investigate whether being identified as having a condition related to fetal alcohol spectrum disorders (FASD) improves the health and social situation for the individual, or for those closest to him/her. The question was divided into two main parts:
The association between alcohol intake and the different FASD-related conditions was not addressed. The preventive measures were also not considered.
FASD is a controversial term referring to several conditions, characterized by a spectrum of symptoms ranging from physical birth defects to neurodevelopmental disorders, which may be caused by the expectant mother consuming alcohol during pregnancy. FASD is not an accepted medical diagnosis in Sweden. However, fetal alcohol syndrome (FAS), which is one of several conditions classified as FASD, is a valid medical diagnosis. FAS is characterized by a complex combination of physical, psychological and cognitive anomalies.
This systematic review presents the current scientific evidence regarding the prevalence of disabilities in individuals with FASD-related conditions. It also provides a summary of these individuals’ experiences of living with FASD and summarizes the evidence regarding the effects of interventions.
FAS is characterized by a complex set of physical traits, including growth deficiency and specific facial features, as well as evidence of central nervous system dysfunction. Partial fetal alcohol syndrome (pFAS) is an FASD-related condition that is applied to individuals who exhibit most of the symptoms consistent with FAS, but who do not meet all of the criteria for a full FAS diagnosis. Alcohol-Related Birth Defects (ARBD) is a term used to describe individuals with physical defects, but not the behavioural and cognitive impairments typically associated with FAS. A third FASD-related condition, Alcohol-Related Neurodevelopmental Disorder (ARND), describes individuals who exhibit the cognitive and behavioural impairments characteristic of FAS, but not the associated physical traits.
This SBU assessment focuses on individuals who meet the criteria for any of the FASD-related conditions. SBU has taken no position regarding whether the disabilities assessed are caused by exposure to alcohol, or whether there are any other contributing factors.
It is not clear how many people meet the criteria for the various FASD-related conditions in Sweden. According to The Swedish National Patient Register, about ten children born in Sweden are diagnosed with FAS annually. What percentage of actual cases this represents is unclear. There is also a group of adoptive and immigrant children who have FAS. In Sweden, most children with FAS are raised by foster or adoptive parents.
SBU was commissioned by the Swedish Government (Reg. no. STY2015/59) to assess FASD. The project was conducted in collaboration with The National Board of Health and Welfare and The Public Health Agency of Sweden. The assessment systematically reviews the scientific literature on the effectiveness and cost-effectiveness of interventions aimed at individuals with FASD and their parents; the FASD-related social costs; the prevalence of disabilities and the social situation of individuals with FASD; as well as the experiences of individuals with FASD and their families regarding the condition and interventions. The certainty of the evidence was assessed using GRADE or CERQual. As a complement to the systematic literature review on the prevalence of disabilities and the social situation, we have conducted a registry study on children in Sweden who are diagnosed with FAS.
Collaboration with a non-profit organisation for individuals with FASD and their relatives (FAS föreningen) was established to highlight their perspective.
Socioeconomic and ethical aspects are discussed based on the published literature, as well as on discussions with experts from both the FASD project group and external reference groups.
Children with FASD may have difficulties on many different fronts, without meeting the full criteria for any established diagnosis, e.g. ADHD, autism, or intellectual disability. It is important that these children and their families not go unnoticed; regardless of diagnosis, they need to be treated in a professional manner and provided with appropriate care and support from the healthcare and social services, as well as proper support in school.
Although we do not yet know the exact extent of the disabilities or the nature of the social situation experienced by children who meet the criteria for the various FASD-related conditions, there is some knowledge about which disabilities are characteristic of FASD. It is important to keep this information in mind when assessing the needs of each individual.
presents a comprehensive, systematic assessment of available scientific evidence. The certainty of the evidence for each finding is systematically reviewed and graded. Full assessments include economic, social, and ethical impact analyses.
SBU assessments are performed by a team of leading professional practitioners and academics, patient/user representatives and SBU staff. Prior to approval and publication, assessments are reviewed by independent experts, SBU’s Scientific Advisory Committees and Board of Directors.
Registry study: Lisa Berg, Researcher, Centre for Health Equity Studies, Stockholm University