Introduction
Fetal alcohol spectrum disorder (FASD) includes a range of conditions resulting from
prenatal alcohol exposure (PAE) during pregnancy. Maternal alcohol consumption during
pregnancy carries the risk of affecting fetal development, leading to lifelong physical,
behavioral, and cognitive impairments. FASD serves as an umbrella term for three primary
clinical entities: fetal alcohol syndrome (FAS), partial fetal alcohol syndrome (pFAS),
and alcohol-related neurodevelopmental disorder (ARND), each manifesting with varying
severity levels. However, there is ongoing debate regarding the classification of
FASD subtypes, with some definitions also including alcohol-related birth defects
(ARBD) and neurobehavioral disorders associated with prenatal alcohol exposure (ND-PAE)
as described in the DSM-5.[1 ]
With an estimated incidence of approximately 1.77%[2 ] of live births in Germany, FASD stands as one of the most prevalent chronic conditions
present at birth.
International guidelines have predominantly focused on evidence-based diagnostic criteria
to facilitate early and precise identification of the disorder,[3 ]
[4 ]
[5 ]
[6 ] laying the groundwork for ongoing care and support for children and adolescents
with FASD and their families.
Tailored interventions (measures designed to support the child's development and well-being)
and support services addressing the specific needs of children and adolescents with
FASD can mitigate the occurrence of secondary conditions and comorbidities of this
disease, thus enhancing the quality of life for affected individuals and their social
environment.
However, international guidelines seldom provide specific recommendations for the
care of individuals with FASD. Beyond diagnosis, guidelines primarily offer general
advice for managing individuals with FASD, such as employing clear and simple language,
maintaining routines, and structuring daily activities.[7 ] Various guidelines advocate for the use of management plans[7 ]
[8 ]
[9 ] and connecting individuals with FASD and their families to resources that may improve
outcomes.[7 ]
[8 ]
[9 ]
[10 ]
[11 ]
[12 ]
[13 ] Emphasis is also placed on the importance of educating both patients and their entire
social environment about the condition.[7 ]
[11 ]
[12 ] Policy-level guidelines focus on establishing basic infrastructures for improved
care of individuals with FASD.[14 ] While some specific suggestions on interventions are based on expert and patient
opinions or findings from focus groups,[9 ]
[11 ]
[12 ]
[13 ] these studies provide valuable insights into the lived experiences and practical
needs of individuals with FASD and their caregivers. Despite these efforts, there
remains a critical gap in evidence-based intervention recommendations aimed at enhancing
specific functions in individuals with FASD. The combination of qualitative findings
and evidence-based research is essential for developing comprehensive, patient-centered
care approaches. Therefore, addressing the gap in evidence-based recommendations is
essential to improving outcomes for this population.
The German guideline presented here marks a significant advancement as the first internationally
to provide evidence-based recommendations for interventions in children and adolescents
with FASD. This represents a fundamental step toward improving the health and well-being
of children with FASD.
Methods
We tried to reduce potential bias in the guideline by ensuring a balanced composition
of the guideline group, which was established in 2022 and consisted of representatives
from 15 German professional societies, 10 FASD experts, and two members of the patient
support group “FASD Deutschland.” Additionally, two nonvoting observers from the German
Ministry of Health (Manuela Schumann, Kirsten Reinhard MD) participated in the guideline
conferences and the consensus process was overseen by methodological supervisors and
moderators ([Supplementary Table S1 ], available in the online version).
Each member of the consensus group provided a declaration of interest according to
international requirements,[15 ] which was reviewed by an independent person (conflict of interest officer). These
declarations were discussed at the inaugural guideline conference (July 1, 2022).
None of the consensus group members had conflicts of interest that warranted exclusion
from the voting process or any related activities.
The project on which this publication is based was funded by the Innovation Fund of
the Federal Joint Committee (Gemeinsamer Bundesausschuss—G-BA, funding code 01VSF21012).
The funding did not influence the development and content of the guideline in any
way.
The key question for the systematic literature search was consented to in the first
consensus conference and structured in PICOS format (PICOS: population, intervention,
comparator, outcome, and study design). The relevance of each outcome was rated on
a 1 to 9 scale (1–3: limited importance; 4–6: important but not critical; 7–9: critical).
The PICOS scheme, upon which the inclusion criteria for the systematic literature
review were based, is detailed in [Supplementary Table S2 ] (available in the online version).
The key question was:
Which interventions (I) are associated with positive outcome criteria (O) compared
to no interventions, placebos, contextual effects, alternative interventions, or pre–post
comparisons (C) in children and adolescents (0–18 years) with FASD (P)?
The “positive outcome criteria” were further specified into the following domains:
Improvement in the neuropsychological functions of children/adolescents with FASD
Avoidance of adverse effects of the interventions
Reduction of complications/secondary diseases
Improving the participation of children/young people with FASD
Improving the quality of life of children/young people with FASD
Relief for caregivers (biological, foster, and adoptive parents, other caregivers)
and improving the quality of life of the entire family/institution
Enhancing knowledge of the health condition or disability and fostering insight into
the associated challenges
The outcomes selected for this guideline address the multifaceted needs of children
with FASD and their support systems. Improvement of neuropsychological functions was
prioritized due to its alignment with the German S3 guideline on FASD diagnostics,
reflecting its centrality to cognitive, emotional, and social development. Other outcomes,
such as avoiding side effects, complications, and secondary conditions, highlight
the importance of safe and preventive care. Enhancing participation, quality of life,
and caregiver support aligns with person-centered approaches, acknowledging the critical
role of families and social integration in successful interventions. Finally, knowledge
dissemination and caregiver empowerment were included to address gaps in awareness
and promote sustainable care practices. Together, these outcomes offer a comprehensive
framework for improving both individual and systemic care for children and adolescents
with FASD.
Based on our key question, we conducted a systematic literature search in the databases
Medline via PubMed, Wiley Online Library via Cochrane Library, EBSCO (PsycINFO, PsycARTICLES,
PSYNDEX), and Epistemonikos, covering English and German literature published between
January 1, 2012, and August 9, 2022. [Supplementary Tables S2 ] and [S3 ] (available in the online version) present the search strategy and inclusion and
exclusion criteria used to identify eligible publications, respectively.
The quality of evidence for outcomes was assessed using the GRADE method (grading
of recommendations, assessment, development, and evaluation). First, we evaluated
the risk of bias of each publication individually using RoB 2 (Cochrane risk-of-bias
tool—second version[16 ]) for randomized controlled trials, ROBINS-I (Tool for assessing risk of bias in
nonrandomized studies of interventions[17 ]) for nonrandomized controlled trials, a modified version of ROBINS-I instrument
for noncontrolled studies, and AMSTAR-2 instrument (a measurement tool to assess systematic
reviews—second version[18 ]) for systematic reviews. Afterward, we assessed the quality of evidence for each
predefined outcome using the GRADE criteria (risk of bias/study limitations, indirectness,
inconsistency of results, imprecision, publication bias, effect size, dose-response
gradient, and the influence of residual and plausible confounders). The quality of
evidence was categorized into four levels: very low, low, moderate, and high.
Based on the evidence found in the literature, recommendations were formulated according
to the requirements of the Association of the Scientific Medical Societies in Germany
(AWMF): recommendations with the highest level A are expressed as “should,” followed
by level B “ought to,” and the lowest level 0 “may be considered.”
In cases where insufficient evidence was available to make evidence-based recommendations,
expert consensus was sought. This process involved gathering insights and opinions
from professionals with extensive experience in the field. Experts were asked to provide
their perspectives on relevant interventions and practices, ensuring that recommendations
were still grounded in practical expertise and current clinical experience. Expert
consensus allowed us to address areas with limited or no empirical data, ensuring
comprehensive guidance for practitioners despite the lack of robust evidence. These
expert consensus were formulated according to the evidence-based recommendations.
The recommendations and expert consensus for interventions in children and adolescents
with FASD were discussed and modified by the guideline group in the third (March 31,
2023), and fourth (June 7, 2023) online consensus conference, considering the evidence,
clinical relevance, practical applicability, risk-benefit assessments, and ethical
considerations. Guided by an independent methodologically experienced moderator, the
resulting recommendations and expert consensus were consented upon through a formal
consensus process, utilizing the Nominal Group Technique.[19 ] For reaching “consensus” an agreement of > 75% of the participating guideline group
members was required. “strong consensus” represents an agreement of > 95%.
Results
We identified a total of 2,539 publications after deduplication. We did not find any
international guidelines for interventions in children or adolescents with FASD. After
title/abstract screening and full-text screening we included 32 publications (including
four systematic reviews) for quality assessment ([Fig. 1 ]). To access the complete list of publications included in the analyses, the risk
of bias assessment, and the summary of findings tables (GRADE), please refer to [Supplementary Documents S1–S3 ] (available in the online version).
Fig. 1 Flowchart of the systematic literature search.
The guideline group agreed on 21 evidence-based recommendations and 26 expert consensus.
In the following, all recommendations and expert consensus are listed by outcomes.
In compliance with AWMF regulations, the exact wording of the consented recommendations
and expert consensus statements has been faithfully translated from German into English.
This ensures that neither the content nor the phrasing is altered, maintaining the
intended meaning and recommendation strength.
Expert consensus statements are marked with EC.
For each recommendation, we provide the following information in parentheses:
1) Evidence grading (EG) based on the GRADE methodology, classified as:
2) Recommendation grading (RG), categorized as:
A = strong recommendation (“should”)
B = moderate recommendation (“ought to”)
0 = open recommendation (“may be considered”)
3) The corresponding reference source
Additionally, background information is included where necessary.
Disclaimer: All interventions need to consider the individual circumstances of the
person being treated as well as their social environment and their financial situation.
Improvement in the Neuropsychological Functions of Children/Adolescents with FASD
We divided this outcome into sub-outcomes according to the German guideline that identified
specific functions of the central nervous system that are often impaired in individuals
with FASD and, therefore, part of the diagnostic criteria.[20 ]
[21 ]
[Table 1 ] shows the recommendations and expert consensus for the improvement of the neuropsychological
functions, divided into ten FASD-relevant CNS domains.
Table 1
Recommendations for improving the neuropsychological functions of children/adolescents
with FASD
Sub-outcome
Recommendation/expert consensus
Cognitive performance/intelligence
• Children and adolescents with FASD and intellectual disability should not be excluded
from guideline-based therapies (guideline “intellectual disability”)[a ] (EC)
Development
• Infants, toddlers, and primary school children with FASD should undergo developmental
assessments at regular intervals so that developmental impairments can be diagnosed
at an early stage and appropriate support measures can be initiated (EC)
Epilepsy
• In children with FASD and epilepsy, drug and nondrug therapies to reduce seizure
symptoms should be based on the usual therapeutic measures and the guideline “diagnostic
principles for childhood epilepsy”[a ] (EC).
Language
• For children with FASD, interventions to improve language development should be
based on the guideline “therapy of language development disorders”[a ] (EC)
• Regarding therapy, an interdisciplinary decision (including developmental diagnostics,
speech pedagogy/logopedics, and psychology) ought to be made to ensure individually
adapted support (EC)
Fine-/graphomotoric skills or gross motor coordination
• Interventions to improve coordination disorders in children with FASD should be
based on the guideline “circumscribed developmental disorders of motor functions”[a ] (EC)
• The support ought to be adapted to the child's neurological and neurocognitive impairments
and, due to the common difficulty of transferring learned content, ought to be closely
aligned with everyday life (EC)
Spatial-visual perception or spatial-constructive abilities
• Children with FASD and visual-spatial dysfunctions, visual impairment should be
clinically ruled out by an ophthalmologist. If a visual impairment is present, appropriate
aids (e.g., glasses, eye covering) should be prescribed and, depending on the clinical
symptoms, visual support should be initiated (EC)
• It may be considered to offer individually adapted occupational therapy to the child
and practical exercise instructions to caregivers in order to improve the visual-spatial
functions of children with FASD (EC)
Executive functions
• Transcranial direct current stimulation (tDCS) ought not to be used solely to improve
executive functions in children with FASD (EG: high; RG: B[39 ])
• Training aimed at promoting inhibitory control, emotion regulation, and behavior
regulation, combined with parent training, ought to be used to enhance executive functions
in school-aged children with FASD (EG: moderate; RG: B[28 ]
[47 ]
[49 ])
Mathematical skills
• Training to develop arithmetic thinking and skills ought to be used to improve arithmetic
abilities in preschool- and school-aged children with FASD. The training should be
adapted to FASD and the child's developmental stage (EG: high; RG: B[29 ]
[45 ]
[50 ]
[51 ]).
Learning and memory skills
• TDCS ought not to be used solely to improve learning and memory in children with
FASD (EG: high; RG: B[39 ]).
Attention
• Drug therapy recommendations to improve attention in children and adolescents with
FASD and ADHD should be based on the guideline “ADHD in children, adolescents and
adults”[a ] (EC)
• TDCS ought not to be used solely to improve attention in children with FASD (EG:
high; RG: B[39 ])
• It may be considered using extrinsic reinforcement to support children with FASD
in certain areas of attention (EG: low; RG: 0[37 ])
• Neurocognitive interventions focusing on self-control and/or attention control strategies
ought to be offered to improve attention performance in preschool- and school-aged
children with FASD (EG: moderate; RG: B[30 ]
[31 ]
[40 ]
[50 ]
[51 ])
• It may be considered using parent training in addition to neurocognitive training
of the children in order to increase the therapeutic effect on the children's attention
performance (EG: moderate; RG: 0[31 ]
[40 ])
Social skills and behavior
• Children with FASD ought to receive social skills training tailored to FASD to increase
their knowledge of appropriate social behavior and improve their social skills (EG:
moderate; RG: B[41 ]
[50 ]
[51 ]
[52 ])
• Neurocognitive training focusing on the development of regulation strategies should
be used to improve the behavioral and emotional regulation in children with FASD (EG:
high; RG: A[28 ]
[30 ]
[31 ]
[38 ]
[40 ]
[42 ]
[43 ]
[47 ])
• In addition to neurobehavioral and neurocognitive training of children with FASD
to improve emotional and behavioral regulation, a therapy attempt with neuroleptics
can be considered for severe behavioral disorders. This is an off-label use for most
active substances (EC)
• Children/adolescents (≥6 years of age) with FASD and ADHD should be offered therapy
with methylphenidate to improve hyperactivity and impulsivity (EG: high; RG: A[35 ]
[50 ]
[53 ])
• Social skills training ought to be supplemented by psychoeducation of parents/caregivers
(EG: moderate; RG: B[41 ]
[50 ]
[51 ]
[52 ])
• Neurocognitive training ought to be supplemented by resource-oriented psychoeducation
of parents/caregivers in order to further improve the children's regulation strategies
(EG: high; RG: B[31 ]
[38 ]
[40 ]
[42 ]
[43 ]
[47 ])
• Psychoeducational measures should be offered to parents/caregivers of children with
FASD to encourage positive behavioral change in the children (EG: moderate; RG: A[48 ])
• When providing psychoeducation to parents, their cognitive abilities and any existing
neurological and psychiatric disorders (including FASD) should be considered (EC)
Additional recommendations/expert consensus
• Children with FASD should receive pedagogical support tailored to their individual
abilities (cognitive abilities, executive functions, social-adaptive abilities, and
behavioral regulation) in kindergarten and school (EC)
• All educators and teachers should receive information regarding fetal alcohol spectrum
disorders and strategies adapted to the clinical profile when teaching and interacting
with children and adolescents with FASD (EC)
• A support and treatment plan that is tailored to the specific needs of the child
or adolescent with FASD should be developed, formulated, and implemented. This process
should involve a collaboration of the legal guardians/parents, FASD professionals
(e.g., doctors or psychologists providing care), and educators/teachers. Additionally,
a potential compensation for disadvantages should be considered (EC)
Abbreviations: EC, expert consensus; EG, evidence grading (low; moderate; high); FASD,
fetal alcohol spectrum disorder; RG, recommendation grading (A—strong recommendation;
B—recommendation; 0—open recommendation).
a The guideline is available only in German.
Background
Attention
There is evidence that high choline intake may improve attention in children with
FASD. In order to prevent adverse effects of choline supplementations (e.g., fishy
body odor) a choline-rich diet can be used to ensure a sufficient supply of choline
for the child.
Before starting drug treatments, all relevant factors (e.g., age, severity of problems,
comorbidities, individual needs) must be considered. The treatment must be discussed
with the children/adolescents with FASD (if old enough) and their parents/legal guardians
and they must be informed about possible adverse effects. Further, regular monitoring
of possible adverse effects and the effectiveness of the treatment must be performed
and modified if needed.
Neurocognitive training includes neurobehavioral, cognitive, and behavioral therapies,
serious games as well as similar therapeutic modalities targeting domains, such as
attention, memory, problem-solving, spatial reasoning, language, interaction, and
executive functions. It aims at strengthening neural connections, facilitating the
formation of new synapses, and enhancing existing neural networks.
Social skills training is a therapeutic approach focused on improving individuals'
ability to interact effectively in social situations. It involves teaching specific
social behaviors, communication skills, and interpersonal strategies to enhance social
competence, confidence, and relationships.
Avoidance of Adverse Effects of the Interventions
In the field of preventing side effects of interventions, two expert consensuses have
been adopted ([Table 2 ]).
Table 2
Recommendations for avoiding adverse effects of interventions in children/adolescents
with FASD
Recommendation/expert consensus
• Due to potential adverse drug reactions drug therapies ought to be administered
to children and adolescents with FASD if pedagogical-psychological treatments (e.g.,
neurocognitive training) are not sufficiently effective in reducing the CNS functional
impairments (EC)
• Drug therapies should be provided under strict medical supervision. When selecting
and monitoring drug therapies, the recommendations of the guidelines “ADHD in children,
adolescents and adults”[a ] and “disorder of social behavior”[a ] should be followed, along with the specialist information on the medication (EC)
Abbreviations: EC, expert consensus; EG, evidence grading (low; moderate; high); FASD,
fetal alcohol spectrum disorder; FASD, fetal alcohol spectrum disorder; RG, recommendation
grading (A—strong recommendation; B—recommendation; 0—open recommendation).
a The guideline is available only in German.
Background
When offering pharmaceutical therapies, FASD as well as the individual needs and comorbidities
must be considered as well as possible interactions with other medications.
Reduction of Complications/Secondary Diseases
The evidence-based recommendations and expert consensuses defined in the guideline
for the outcome “reduction of complications/secondary disorders” are presented in
[Tables 3 ] and [4 ].
Table 3
Recommendations for reducing complications/secondary diseases in children/adolescents
with FASD (part 1)
Recommendation/expert consensus
• To prevent secondary diseases or complications, or at least detect them at an early
stage, children and adolescents with FASD should undergo regular pediatric and developmental
diagnostic examinations throughout their entire age range, from 0–18 years (EC)
• Child and adolescent psychiatry should be promptly involved if there are any indications
of psychiatric symptoms or risky behavior (e.g., risky alcohol/drug use, self/other
endangerment, suicidal acts) in the child/adolescent (EC)
• Depending on the clinical symptoms, other specialties should be consulted, such
as pediatric subdisciplines, ear, nose, and throat (ENT) specialists, ophthalmology,
orthopedics, pediatric radiology, psychotherapy, and others (EC)
• To develop effective therapies and interventions for children/adolescents with FASD,
these other specialties ought to be integrated into a comprehensive therapy plan,
and professional case management ought to be established for each child (EC)
• Transparent, interdisciplinary cooperation and the involvement of the children and
adolescents themselves, as well as their caregivers/legal guardians ought to be considered
throughout the entire support system and therapy period. A stable social environment
ought to be created to prevent secondary disorders (EC)
Abbreviations: EC, expert consensus; EG, evidence grading (low; moderate; high); FASD,
fetal alcohol spectrum disorder; RG, recommendation grading (A—strong recommendation;
B—recommendation; 0—open recommendation).
Table 4
Recommendations for reducing complications/secondary diseases in children/adolescents
with FASD (part 2)
Sub-outcome
Recommendation/expert consensus
Risky behavior
• To reduce risky alcohol consumption in adolescents with FASD, alcohol-preventive
neurocognitive training ought to be offered to adolescents, along with psychoeducation
for their parents (EG: high; RG: B[44 ]
[54 ])
• It may be considered to offer training to reduce risky behaviors to primary school
children with FASD in order to increase their knowledge (EC)[a ]
School failure and drop-out
• To ensure positive learning outcomes and prevent school failure or dropout, learning
content and environments ought to be tailored to the impairments of children/young
people with FASD. If necessary, additional support measures (at school and/or at home)
ought to be introduced. Therefore, doctors/psychologists/therapists in charge ought
to communicate with the educational staff at school or after-school care, as well
as the children/young people, and their guardians, to coordinate educational measures
and support integration into existing support programs (EC)
Delinquency
• To prevent delinquent behavior, it may be considered to use neurocognitive training
or drug therapies at an early stage to support the child's regulation of emotions
and behavior. Since adolescents with FASD often struggle to foresee the consequences
of their actions, the consequences of delinquent behavior ought to be explained to
them comprehensibly and repeatedly by various professionals as well as close caregivers.
Additionally, these explanations ought to be adapted to the individual's learning
style and illustrated accordingly. (EC)
• The police and judiciary ought to be educated about FASD and informed about the
specific characteristics of the individual child/adolescent with FASD. They ought
to involve responsible medical professionals and legal guardians/caregivers in their
assessment of delinquent behavior to determine the extent to which age-appropriate
capacity for understanding and control is present. This will allow them to judge effectively
and fairly in each case (EC)
•
Maltreatment
• To prevent child maltreatment (as victims or offenders), children and adolescents
with FASD ought to be offered early, easily understandable, and repeated education
(including sexual education with contraceptive options) as well as strategies for
self-assertion and support in interpersonal interactions. In addition, guardians and
professionals across the entire support system ought to be informed about the vulnerability
of children and adolescents with FASD to child abuse (EC)
Abbreviations: EC, expert consensus; EG, evidence grading (low; moderate; high); FASD,
fetal alcohol spectrum disorder; RG, recommendation grading (A—strong recommendation;
B—recommendation; 0—open recommendation).
a The training should be tailored to the child's developmental stage and aligned with
their level of adaptive functioning.
Background
Compared to the average population individuals with FASD have higher rates of conditions
such as psychiatric diseases (incl. addictions), risky behavior, school failure, delinquency,
maltreatment, hospitalization, and somatic diseases (e.g., visual disturbances, dizziness,
insomnia, headaches, and shortness of breath).
Building on the principles of transparent and interdisciplinary cooperation, it is
also essential to incorporate a strengths-based perspective that recognizes and leverages
the individual strengths of children and adolescents with FASD, as well as those of
their caregivers, throughout the support system and therapy period. By emphasizing
individual strengths alongside therapeutic interventions, we can promote a holistic
approach that fosters self-efficacy and encourages active participation from children,
adolescents, and their caregivers in the therapeutic process.
Risky behavior and delinquency: It is important to recognize that individuals with
FASD may face challenges not due to a lack of understanding of rules or situations,
but rather due to brain-based differences that affect impulse control, learning from
experiences, and managing high-risk scenarios.
Transition: In adulthood, many individuals with FASD still require support in their
daily lives. The transition from pediatricians to psychiatrists/neurologists for adults
is important and should be well prepared. The guideline “Transition from Pediatrics
to Adult Medicine” (only provided in German) offers general recommendations for a
successful transition.
Improving the Participation of Children/Young People with FASD
Participation was considered a highly relevant outcome by the guideline group. Based
on the literature, recommendations, and expert consensus were developed for three
related sub-outcomes (see [Table 5 ]).
Table 5
Recommendations for improving the participation of children/young people with FASD
Sub-outcome
Recommendation/expert consensus
Learning and application of knowledge
• If participation in learning and the application of knowledge cannot be sufficiently
ensured for a child or adolescent with FASD due to individual cognitive impairments,
the need for support from an integration assistant or school companion ought to be
assessed, and other appropriate support measures ought to be implemented if necessary
(EC)
• Professional integration assistants or school companions ought to be familiar with
the clinical profile of FASD and its implications for learning, planning, social behavior,
and emotional regulation. They ought to be trained in working with children and adolescents
with FASD, and the benefits of this support ought to be reviewed regularly (EC)
• Adolescents with FASD ought to be offered educational support measures adapted to
their cognitive and socio-emotional abilities as part of an individual, needs-oriented
support plan coordinated with them and their legal guardians or caregivers (EC)
Domestic life
• For children with FASD, psychoeducation for parents and/or parent-child training
ought to be implemented to improve participation in the home environment (EG: moderate;
RG: B[40 ])
• Legal guardians or caregivers of children and adolescents with FASD ought to be
offered educational, psychological, and financial support tailored to the family's
needs and the child's impairments to ensure stable care (EC)
• If the promotion of development and education of a child/adolescent in the origin,
adoptive, or foster family is not (or no longer) possible, forms of pedagogically
supported, supervised living adapted to the individual needs and impairments of the
child/adolescent with FASD ought to be provided. (EC)
Interpersonal interaction and relationships
• For children with FASD, neurocognitive training focusing on self-regulation or social
skills ought to be implemented in combination with psychoeducation for parents to
improve the child's interpersonal skills and thus participation in the lives of peers
(EG: moderate; RG: B[41 ]
[47 ])
• Neurocognitive therapies should be offered to children and adolescents with FASD
to improve social interaction. These should be adapted to the specific impairments
of children with FASD, which are biologically based due to prenatal alcohol-induced
brain damage (EC)
• These child-centered therapies ought to be supplemented by psychoeducation for legal
guardians or caregivers and by intensive education of other caregivers (e.g., educational,
therapeutic, and psychological professionals) so that they can develop an understanding
of the condition and the child's individual impairments and establish strategies to
improve their interactions with the child. (EC)
Abbreviations: EC, expert consensus; EG, evidence grading (low; moderate; high); FASD,
fetal alcohol spectrum disorder; RG, recommendation grading (A—strong recommendation;
B—recommendation; 0—open recommendation).
Background
Psychoeducation for individuals with FASD, their caregivers, and societal services
should consider the brain-based differences of individuals with FASD, focusing on
tailored strategies that account for difficulties in impulse regulation and vulnerability
management. It is critical to avoid framing individuals with FASD as willfully engaging
in maladaptive behaviors, and instead to highlight the importance of structured support
systems that address their unique neurodevelopmental needs.
Improving the Quality of Life of Children/Young People with FASD
Even though the improvement of quality of life through interventions was considered
a highly relevant outcome by the guideline group, no literature-based evidence was
found, and therefore, an expert consensus was formulated (see [Table 6 ]).
Table 6
Recommendation for improving the quality of life of children/young people with FASD
Recommendation/expert consensus
• Both in the promotion and therapy of children and adolescents with FASD, as well
as in the psychoeducation and support of legal guardians and caregivers, the focus
ought to be on improving or at least stabilizing the quality of life of the affected
children/adolescents and their families (in addition to specific therapy goals based
on the individual's impairments; EC)
Abbreviations: EC, expert consensus; EG, evidence grading (low; moderate; high); RG,
recommendation grading (A—strong recommendation; B—recommendation; 0—open recommendation).
Background
The World Health Organization (WHO) “defines Quality of Life as an individual's perception
of their position in life in the context of the culture and value systems in which
they live and in relation to their goals, expectations, standards, and concerns”.[22 ]
The systematic literature search identified no publication specifically addressing
this topic.
According to subjective reports, forms of animal-assisted interventions can have a
positive effect on the quality of life of children and adolescents with FASD and their
families. Assistance dogs may improve the quality of life by strengthening social
relationships, increasing the child's sense of security, and, thereby, achieving greater
independence, as has already been documented with assistance dogs in children with
autism spectrum disorders.[23 ]
[24 ]
[25 ]
[26 ]
Relief for Caregivers (Biological, Foster, and Adoptive Parents, Other Caregivers)
and Improving the Quality of Life of the Entire Family/Institution
A guideline recommendation was agreed upon for the quality of life of the entire family,
which is linked to parental stress reduction and the fulfillment of family needs ([Table 7 ]).
Table 7
Recommendation for creating relief for caregivers (biological, foster, and adoptive
parents, other caregivers) and for improving the quality of life of the entire family/institution
Recommendation/expert consensus
• Parents of children with FASD ought to be offered psychoeducation (if necessary
with individual goal-setting) in combination with therapies for the child and family
support to reduce parental stress and improve the fulfillment of the family's needs
(EG: moderate; RG: B[42 ]
[43 ]
[55 ])
Abbreviations: EC, expert consensus; EG, evidence grading (low; moderate; high); FASD,
fetal alcohol spectrum disorder; RG, recommendation grading (A—strong recommendation;
B—recommendation; 0—open recommendation).
Background
Long-term support for families adapted to the individual family factors seems necessary
to fulfill their needs sustainably.
Enhancing Knowledge of the Health Condition or Disability and Fostering Insight Into
the Associated Challenges
[Table 8 ] presents the guideline group's recommendations and expert consensus for the outcomes
of “knowledge enhancement” and “disease understanding.”
Table 8
Recommendation for enhancing knowledge of the health condition or disability and fostering
insight into the associated challenges
Recommendation/expert consensus
• Caregivers/legal guardians of children with FASD should be provided with information
in group workshops in the presence of online information material or written information
to improve their knowledge about the condition of FASD (EG: high; RG: A[48 ])
• Legal guardians or caregivers of children with FASD ought to be offered psychoeducation
in combination with therapies for the child and family support to improve their knowledge
about the condition of FASD in the long term. (EG: moderate; RG: B[42 ]
[43 ])
• When providing psychoeducation to caregivers/parents, we recommend considering their
cognitive abilities and any neurological and psychiatric disorders (including FASD;
EC)
• In psychoeducation for legal guardians or caregivers, attention should be paid to
their cognitive conditions and any possible neurological and psychiatric disorders
(including FASD; EC)
• Children and adolescents with FASD should be provided with information that is adapted
to their developmental stage and cognitive abilities to improve their knowledge about
the condition of FASD (EC)
• According to children and adolescents with FASD and their caregivers, the knowledge
and communication about their condition or the cause of their impairments often leads
to relief. Therefore, research in this area should be conducted. Studies on interventions
to improve awareness of the disorder in children and adolescents with FASD are lacking,
but they are extremely relevant from a clinical perspective, especially in relation
to risky behavior, recognition of support, help-seeking, and transition. Therefore,
research projects should also be planned in this area (EC)
Abbreviations: EC, expert consensus; EG, evidence grading (low; moderate; high); FASD,
fetal alcohol spectrum disorder; RG, recommendation grading (A—strong recommendation;
B—recommendation; 0—open recommendation).
Background
Depending on the cognitive abilities of the caregivers, simple language should be
used when providing information.
Improvement in Coping and Self-Efficacy
One guideline recommendation was adopted for the improvement of coping and self-efficacy
as an outcome (see [Table 9 ]).
Table 9
Recommendation for improving coping and self-efficacy in children/adolescents with
FASD
Recommendation/expert consensus
• Children/adolescents with FASD and their classmates ought to be educated in school
about factors of mental health and strategies for coping with health impairments to
strengthen the coping skills as well as the self-concept of children/adolescents with
FASD (EG: moderate; RG: B[54 ])
Abbreviations: EC, expert consensus; EG, evidence grading (low; moderate; high); FASD,
fetal alcohol spectrum disorder; RG, recommendation grading (A—strong recommendation;
B—recommendation; 0—open recommendation).
Background
By sharing their personal experiences and talking about FASD, children with FASD can
help peers, teachers, and parents develop a better understanding of the challenges
and needs of individuals with FASD. This can reduce prejudice, increase empathy, and
create an inclusive environment. Thereby, the child's needs must be respected and
the voluntariness of the educational work must always be emphasized.
Additional Expert Consensus on Quality of Life, Relief of Caregivers, Knowledge and
Coping/Self-Efficacy
Since the guideline group considered the quality of life, relief for caregivers, knowledge
enhancement, and coping/self-efficacy as highly relevant for the daily lives of children
with FASD and their families, additional expert consensuses were adopted in these
outcome areas (see [Table 10 ]).
Table 10
Additional expert consensus regarding the quality of life, relief of caregivers, knowledge,
and coping/self-efficacy
Recommendation/expert consensus
• The condition of FASD, individual strengths and weaknesses, daily life organization,
current issues, and planned therapy content and goals should be communicated and discussed
transparently, adequately, and, if necessary, repeatedly with the children and adolescents.
When planning therapy, the individual wishes, participation preferences and concerns
of children and adolescents with FASD should be taken into account (EC)
• Professionals who care for children and adolescents with FASD ought to be familiar
with regional and national FASD self-help groups/patient advocacy organizations (EC)
• The professionals ought to inform children and adolescents, their legal guardians,
and other caregivers about the offerings and support options of self-help (EC)
• Caring professionals, health researchers, and patient advocacy organizations/self-help
groups ought to collaborate to exchange knowledge and thereby improve the care and
quality of life of people with FASD and the affected families (EC)
Abbreviations: EC, expert consensus; EG, evidence grading (low; moderate; high); FASD,
fetal alcohol spectrum disorder; RG, recommendation grading (A—strong recommendation;
B—recommendation; 0—open recommendation).
Background
Cognitive abilities must be considered when dealing with children/adolescents with
FASD, and communication must be adjusted to their developmental level.
Discussion
With an estimated prevalence of 1.98% in the WHO European Region, FASD represents
a significant public health concern.[27 ] Children diagnosed with FASD encounter a number of challenges that affect their
daily functioning and long-term development. The impact of FASD extends beyond childhood
and persists into adulthood. Without adequate support and interventions, many children
with FASD struggle with everyday situations, preventing them from living independently
later in life.
Despite the high prevalence of FASD, there is a lack of studies investigating intervention
strategies for children and adolescents with this condition. Particularly concerning
are the research gaps regarding enhancing disease management, self-efficacy, and quality
of life in this population, prompting an urgent need for further investigation.
The assessment of studies found in the systematic literature research was conducted
using the GRADE methodology. However, the limited number of available studies in this
research field, combined with their heterogeneity in design, outcomes, and interventions,
posed significant challenges for standard comparisons and the calculation of effect
estimates. Despite these limitations, GRADE provided a structured framework for evaluating
the quality of evidence and allowed us to draw evidence-informed conclusions. In areas
where there was insufficient evidence, we were unable to formulate evidence-based
recommendations. To address these gaps, we relied on expert consensus, drawing on
the knowledge and practical experience of professionals in the field. This approach
ensures that even in the absence of strong evidence, high-quality, practice-oriented
recommendations can be made, reflecting the current state of knowledge and established
clinical practice. The inclusion of expert consensus allows for the formulation of
realistic and actionable guidance that is highly relevant in clinical settings.
Existing studies often demonstrate significant qualitative deficiencies. Small study
populations hinder sub-analyses of potential confounders such as age, gender, or comorbidities.[28 ]
[29 ]
[30 ]
[31 ]
[32 ]
[33 ]
[34 ] Study designs without control groups fail to definitively attribute observed effects
solely to the interventions themselves and cannot exclude potentially confounding
factors such as test-retest effects, the impact of normal development on test results,
or the influence of increased attention from study personnel.[30 ]
[32 ]
[35 ]
[36 ] Additionally, the clinical setting may complicate the transfer of intervention content
into real-world settings, leaving the benefits of interventions ambiguous, as children
with FASD often suffer from a lack of transfer performance due to executive function
disorder.[36 ]
[37 ]
[38 ] As some studies examine only a brief intervention period, it is unknown whether
extending the intervention duration enhances the therapeutic effect and whether improvements
are sustained in the long term.[35 ]
[36 ]
[39 ] Moreover, the absence of standardized objective assessment tools makes it difficult
to evaluate the efficacy of an intervention. Subjective assessments, such as parent
or caregiver surveys, may be biased due to their expectations.[31 ]
[38 ]
[40 ]
[41 ]
[42 ]
[43 ] Studies rarely include the perspectives of children or adolescents themselves,[44 ] mainly reflecting parental or caregiver views.[30 ]
[40 ]
[41 ]
[45 ] This limitation may partly be caused by the cognitive impairments associated with
FASD, as affected individuals may lack the cognitive capacity to understand and adequately
respond to questions. Additionally, some children may lack the cognitive maturity
to assess their situations accurately, hindering their involvement in the research
process. However, by tailoring questions to the cognitive developmental level of the
children and addressing individual comprehension issues, children with FASD can be
interviewed, as well.
It is essential to note that study populations often include not only children diagnosed
with FASD but also those only exposed to prenatal alcohol (PAE),[37 ]
[44 ]
[46 ] which does not always lead to the development of the clinical picture of FASD. Even
within children with FASD, significant variability exists due to subtypes (FAS, pFAS,
and ARND) and individual differences in the neuropsychological profile, heavily influencing
intervention effectiveness. Considering the various number of symptoms and their diverse
manifestations, interventions for children and adolescents with FASD should be tailored
not only to the disorder itself but also to the strengths and weaknesses of the affected
individuals.
Individual therapy sessions provide personalized programs tailored to each child's
unique abilities and impairments. Particularly, children with severe functional impairments
may benefit more from individual therapies than group sessions, where skill variability
often leads to suboptimal outcomes. However, group sessions may be more effective
for high-functioning children with FASD, enabling them to practice skills within a
social peer context, and facilitating integration into daily life.
Beyond the children themselves, parental or caregiver involvement significantly influences
intervention effectiveness. Integrating therapy content into family routines profoundly
impacts therapy outcomes. Educating caregivers about FASD fosters a deeper understanding
of the disorder, creating the framework for providing appropriate support.[31 ]
[40 ]
[42 ]
[43 ]
[47 ]
[48 ] Depending on caregivers' cognitive abilities, appropriate language should be used
in the communication process and individual impairments need to be considered.
In conclusion, while intervention studies for children and adolescents with FASD are
essential for improving outcomes for affected individuals, numerous methodological
and practical considerations must be addressed to enhance the validity and applicability
of findings, ultimately optimizing intervention strategies for affected children and
their families.
