First Evidence-Based Guideline for Interventions in FASD
Abstract
Prenatal alcohol exposure causes disruptions in brain development. The resulting disorder, fetal alcohol spectrum disorder (FASD), cannot be cured, but interventions can help improve the daily functioning of affected children and adolescents and the quality of life for the entire family.
The aim of the German guideline version 2024 is to provide validated and evidence-based recommendations on interventions for children and adolescents with FASD.
We searched for international guidelines and performed a systematic literature review and a hand search to identify literature (published 2012–2022) on interventions for children (0–18 years) with FASD. The quality of the literature was assessed for predefined outcomes using the GRADE method (grading of recommendations, assessment, development, and evaluation). We established a multidisciplinary guideline group, consisting of 15 professional societies, a patient support group, and 10 additional experts in the field. The group agreed on recommendations for interventions based on the systematic review of the literature and formulated additional recommendations, based on clinical experience/expert evidence in a formal consensus process.
No international guideline focusing on interventions for patients with FASD was found. Thirty-two publications (4 systematic reviews and 28 original articles) were evaluated. The analysis resulted in 21 evidence-based recommendations and 26 expert consensus, covering the following topics: neuropsychological functioning, adverse effects of therapy, complications/secondary conditions, quality of life, caregiver burden, knowledge of FASD, and coping and self-efficacy.
The German guideline is the first internationally to provide evidence-based recommendations for interventions in children and adolescents with FASD.
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Fetal alcohol spectrum disorders (FASD) in a course of high prenatal alcohol exposure (hPAE) are among the most common causes of developmental disorders. The main reason for pharmacological treatment of FASD children is attention deficit hyperactivity disorder (ADHD), and methylphenidate (MPH) is the drug of choice. The aim of the study was to assess whether children born of hPAE with ADHD, with or without morphological FASD, differ in terms of catechol-O-methyltransferase (COMT) and dopamine receptor D2 (DRD2) gene polymorphisms, and if genetic predisposition affects response and safety of MPH treatment. The polymorphisms of COMT (rs4680) and DRD2 (rs1076560, rs1800497) were analyzed in DNA samples. A borderline significance was found for the correlation between MPH side effects and the G allele of COMT (rs4680) (p = 0.04994) in all ADHD children. No effect of COMT (rs4680) and DRD2 (rs1076560, rs1800497) polymorphisms and the treatment efficacy was observed. The analyzed DRD2 and COMT gene polymorphisms seem to play no role in MPH efficacy in ADHD children with hPAE, while low-activity COMT (Met158) variant carriers may be more intolerant to MPH. The MPH treatment is effective in ADHD independent of FASD, although the ADHD-FASD variant requires higher doses to be successful. These results may help in optimization and individualization in child psychiatry.
Autism-Assistance Dogs (AADs) are highly-skilled service animals trained primarily to ensure the safety of an autistic child by preventing elopement and mitigating ‘meltdowns’. Although anecdotal accounts and case-studies have indicated that AADs confer benefits above and beyond safety, empirical support anchored in validated clinical, behavioral, and physiological measures is lacking. To address this gap, we studied children and their families before and after receiving a well-trained AAD using a within-subject, repeated-measures design. Notably, this study is the first to assess change in a biomarker for chronic stress in both autistic children and their parents. Final analyses included pre-/post-AAD data from 11 triads (parent/handler-dog-child) demonstrating significantly positive psychosocial and biobehavioral effects of AADs.
Individuals with fetal alcohol spectrum disorder (FASD) experience remarkably high rates of mental health and substance use challenges, beginning early in life and extending throughout adulthood. Proactive intervention can help to mitigate some of these negative experiences. Although the literature on FASD intervention is growing, there is currently a lack of consolidated evidence on interventions that may improve mental health and substance use outcomes in this population. Informed by a life course perspective, we undertook a systematic review of the literature to identify interventions that improve mental wellness through all developmental stages for people with prenatal alcohol exposure (PAE) and FASD. A total of 33 articles were identified, most of which were focused on building skills or strategies that underlie the well‐being of children with PAE and FASD and their families. Other interventions were geared toward supporting child and family wellness and responding to risk or reducing harm. There was a notable lack of interventions that directly targeted mental health and substance use challenges, and a major gap was also noted in terms of interventions for adolescents and adults. Combined, these studies provide preliminary and emerging evidence for a range of intervention approaches that may support positive outcomes for individuals with FASD across the life course.
Background
This study was a randomized double-blind sham-controlled trial examining the effects of transcranial direct current stimulation (tDCS) augmented cognitive training (CT) in children with Fetal Alcohol Spectrum Disorders (FASD). Prenatal alcohol exposure has profound detrimental effects on brain development and individuals with FASD commonly present with deficits in executive functions including attention and working memory. The most commonly studied treatment for executive deficits is CT, which involves repeated drilling of exercises targeting the impaired functions. As currently implemented, CT requires many hours and the observed effect sizes are moderate. Neuromodulation via tDCS can enhance brain plasticity and prior studies demonstrate that combining tDCS with CT improves efficacy and functional outcomes. TDCS-augmented CT has not yet been tested in FASD, a condition in which there are known abnormalities in neuroplasticity and few interventions.
Methods
This study examined the feasibility and efficacy of this approach in 44 children with FASD. Participants were randomized to receive five sessions of CT with either active or sham tDCS targeting the dorsolateral prefrontal cortex, a region of the brain that is heavily involved in executive functioning.
Results
The intervention was feasible and well-tolerated in children with FASD. The tDCS group showed nominally significant improvement in attention on a continuous performance test compared to sham (p=.043). Group differences were observed at the third, fourth and fifth treatment sessions. There was no effect of tDCS on working memory (p=.911). Further, we found no group differences on a trail making task (p=.659) or on the verbal fluency test (p=.826). In the active tDCS group, a significant correlation was observed between improvement in attention scores and decrease in parent-reported attention deficits (p=.010).
Conclusions
These results demonstrate that tDCS-augmented CT is well tolerated in children with FASD and potentially offers benefits over and above CT alone.
Background
Fetal Alcohol Spectrum Disorder (FASD) is a public health problem globally, with South Africa having the highest recorded prevalence of all countries. Government programmes to prevent and manage FASD remain limited because of the lack of a specific policy. Herein, we developed a guideline to inform policy on the prevention and management of FASD in South Africa.
Methods
We applied a modified version of the World Health Organization’s approach to guideline development in three phases. In the first phase, we designed the initial guideline prototype. To do this, we conducted an in-depth interview with policymakers and a focus group with relevant service providers on policy requirements for FASD, a document review of policies on FASD and a scoping review of various interventions for FASD. In phase 2, we refined the initially formulated guideline prototype through a discursive approach with seven local and international experts on FASD. Phase 3 involved refining the prototype using a modified Delphi approach. Forty-three and forty-one experts participated in rounds 1 and 2 of the Delphi approach, respectively. The acceptable consensus for each included policy statement was 85%.
Results
We identified three aspects of the proposed guideline, which are the approaches and guiding principles, the prevention measures and the management measures. The guideline proposes that a FASD policy should consider lifespan needs, be culturally diverse, collaborative, evidence-based, multi-sectoral and address social determinants of health contributing to FASD. The essential components of FASD prevention policy consist of awareness and education of the dangers of drinking alcohol, access to treatment for alcohol problems and training of service providers. The management components include capacity building related to diagnosis, educating parents regarding the needs and management, appropriate referral pathways, training of teachers regarding classroom management and support for parents and individuals with FASD.
Conclusion
FASD in South Africa deserves urgent attention. Developing a specific policy to guide programmes could enhance and coordinate the efforts towards preventing and managing FASD. The guideline has the potential to assist policymakers in the development of a comprehensive and multi-sectoral policy for prevention and management of FASD, considering the consensus obtained from the experts.
Background
When the primary disabilities associated with fetal alcohol spectrum disorders (FASD) are not well supported, individuals are at higher risk for mental health problems and other secondary conditions. The Families on Track (FOT) intervention was designed to prevent secondary conditions and improve family functioning in children with FASD. Promising results from a pilot study demonstrated positive effects on child and caregiver outcomes immediately following the intervention. The objective of this study was to examine the sustainability of these effects 6 months postintervention.
Methods
Thirty children (ages 4 to 8) with prenatal alcohol exposure and their caregivers were enrolled in the original study. Families were randomized to the FOT intervention or an active comparison group that provided comprehensive assessment and individualized feedback. The intervention integrated a positive parenting curriculum and a child skills group. Families were assessed at baseline, postintervention, and 6‐month follow‐up visits. Follow‐up data were available for 24 families on child and caregiver outcomes. Data were analyzed using effect size calculations and analysis‐of‐variance techniques.
Results
Relative to the comparison group, intervention families showed continued gains in parenting efficacy and maintained prior improvements in FASD knowledge over the follow‐up period. Although intervention families reported a decrease in their needs being met over the follow‐up period, they continued to report their needs being met to greater extent than those in the comparison group. Consistent with postintervention outcomes, children in both groups exhibited similar decreases in child disruptive behavior 6 months following the intervention. Unfortunately, positive gains seen at postintervention for child self‐esteem and emotion regulation were attenuated at follow‐up.
Conclusions
This pilot study yielded promising effects on important areas of caregiver functioning. However, the intervention's impact on child functioning waned over time, suggesting the need for sustained or alternate child intervention.
Introduction
Brain function deficits in children and adolescents with fetal alcohol spectrum disorders (FASD) have a strong negative impact on their everyday life. Evidence-based intervention programs specifically designed for patients with FASD are therefore needed but still scarce. The aim of the current article is a systematic literature review to identify evidence-based intervention strategies for children and adolescents with FASD.
Materials and methods
A comprehensive systematic literature search was conducted in several relevant databases to identify randomized-controlled intervention studies for children and adolescents with FASD. Abstracts were screened regarding methodological quality and topic. Findings and conclusions of included studies were summarized.
Results
Over the last 20 years, 25 randomized-controlled studies regarding interventions in FASD could be detected (12 of these studies were published since 2015). Overall, there is evidence that some therapeutic interventions are effective in children and adolescents with FASD. Even though evidence-based interventions do rarely lead to improvements of performance into a “normal range”, they are capable to alleviate negative consequences of prenatal alcohol exposure and to relieve daily burdens.
Conclusions
There are only a few randomized-controlled trials regarding therapy research for children and adolescents with FASD. Evidence-based intervention studies indicate that especially the combination of parent and child sessions present a promising approach for the treatment of FASD. Positive treatment effects of interventions seem to be domain specific, except for interventions regarding self-regulation or social interaction.
Assessment of risk of bias is regarded as an essential component of a systematic review on the effects of an intervention. The most commonly used tool for randomised trials is the Cochrane risk-of-bias tool. We updated the tool to respond to developments in understanding how bias arises in randomised trials, and to address user feedback on and limitations of the original tool.