Establishing a multidisciplinary specialist centre for fetal alcohol spectrum disorders-Lessons learned from a model project in Germany.

BACKGROUND: Inadequate coordination between relevant professionals hampers the provision of appropriate care for individuals with fetal alcohol spectrum disorder (FASD). Integrated, multidisciplinary care is thus urgently required. Hence, we aimed at establishing the first university-bound, interdisciplinary specialist centre for FASD in Germany, systematically collecting data on its utilisation and evaluation by attendees. METHODS: After our centre started to provide consultation and support services in July 2019 until May 2021, we collected 233 questionnaires on the centre's utilisation (including attendees' sociodemographic characteristics and the topics on which they requested consultation, e.g., general information about FASD, consultation on therapy options, and educational consultation). Ninety-four of 136 individuals who received consultation at our centre submitted an evaluation questionnaire that recorded attendees' satisfaction with the support they had received (e.g., the extent to which the consultation met their needs). RESULTS: Of 233 participants who completed the utilisation questionnaire, 81.8% were female, and 56.7% were aged 40 to 60 years. Moreover, 42% were foster parents, while 38% were professionals. Most attendees had questions on FASD in general as well as on a specific child or adolescent with FASD. Almost three quarters of the attendees requested consultation on adequate therapies for FASD patients, while 64% had questions on parenting issues. The overall quality of the consultation was rated very well. DISCUSSION: Our service was used by both caregivers and professionals who reported numerous and complex concerns and needs. Professionally sound and multidisciplinary services are viable instruments to meet those needs, bearing the potential for quick and notable relief among individuals affected. We propose further advancement of networking and coordination between care providers, the expansion of multidisciplinary services, and securing early diagnosis and consistency of care as relevant steps to even better support children and adolescents with FASD and their families in the future.

Transcranial magnetic stimulation as a feasible, non-invasive, neuromodulatory intervention in fetal alcohol spectrum disorders. A very first proof of concept.

INTRODUCTION: A neurobiological feature of Fetal Alcohol Spectrum Disorder (FASD) is a global decrease in neuronal connectivity, which leads to significant impairments in everyday functionality. Non-invasive repetitive transcranial magnetic stimulation (rTMS) could potentially positively influence neuronal plasticity but has not yet been studied in FASD. The present trial addresses this gap, making it the first-ever study of rTMS in FASD. MATERIALS AND METHODS: The prospective clinical trial was conducted at the LMU University Hospital Munich and enrolled eight FASD participants aged 6-16. Six sessions of 1 Hz-rTMS over the left dorsolateral prefrontal cortex were administered two times a week for three weeks consisting of 1500 pulses at 90 % of resting motor threshold in four trains of 375s. Outcome measures investigated feasibility and treatment response of rTMS on executive functions, attention/impulsivity, social-emotional regulation and quality of life (QoL) via standardized tests and the FASD parents' app. RESULTS: Adherence and retention rate were 100 %. Adverse events (AEs) were mild and self-limiting, resulting in a per-session risk of 53.3 %, with local paraesthesia accounting for 54.2 % of the AEs. There were individual relevant but no significant group-level improvements in the investigated functional cerebral domains or participants' QoL. The FASD parents' app showed no significant change in participants' daily functioning or caregivers' QoL. Caregivers' parental stress decreased significantly. CONCLUSION: FASD is a very complex disorder that is difficult to treat. In addition, comorbidities as atypical responses to pharmacotherapies are frequent. For this reason, non-invasive, innovative therapies for children with FASD have to be developed. For the first time, rTMS was shown to be safe, tolerable, and acceptable and thus well feasible in paediatric patients with FASD. Further clinical studies with larger samples are needed to identify effective stimulation protocols and to evaluate treatment response.

Prognostic factors for long-term outcome in children with fetal alcohol spectrum disorders.

INTRODUCTION: Known protective factors for long-term outcome in children with fetal alcohol spectrum disorders (FASD) are early diagnosis and a stable, non-violent supportive environment. Which factors contribute to the stability of care is not yet known. Thus, the aim of our study was to evaluate whether the age at diagnosis and the complexity of brain dysfunction play a role for placement changes in children with FASD. MATERIALS AND METHODS: An online survey was conducted among caregivers and professionals caring for children with FASD and seeking help at the German FASD Competence Centre Bavaria (N = 232). The survey collected information about diagnosis, brain dysfunctions, behavioural factors influencing everyday life and changes of placement. The association of timing of diagnosis, brain dysfunctions and neurobehavioral impairment with changes of placement (<2 vs. 2 or more changes) was evaluated via logistic regression models. RESULTS: About 50% of the children received their diagnosis of FASD after the age of 5 years. The complexity of brain dysfunctions in children with FASD affecting everyday life was high. 15% of the children experienced four or more changes of placement. Children with more neuropsychological impairments experienced more changes of placement (OR: 2.53, 95% CI: 1.36-4.71). CONCLUSIONS: Even though our results need to be interpreted with caution due to methodological limitations such as the use of a convenience sample and limited statistical power, they imply that severely affected children with FASD experience a less stable environment. These children may therefore be at high risk for a negative prognosis. To warrant a better prognosis for the affected children, professionals urgently need to pay attention to early recognition and the complexity of neuropsychological impairments in children with FASD as well as to the support that caregivers urgently need.

Evidence-based interventions for children and adolescents with fetal alcohol spectrum disorders - A systematic review.

INTRODUCTION: Brain function deficits cause strong negative impacts for the everyday lives of children and adolescents with fetal alcohol spectrum disorders (FASD). Therefore, evidence-based intervention programs that are specifically designed for patients with FASD are needed but still scarce. The aim of the presented article is a systematic literature review of 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. RESULTS: We identified 25 randomized-controlled studies regarding interventions in FASD. Overall, evidence indicating that some therapeutic interventions are effective in children and adolescents with FASD was found. Even though evidence-based interventions rarely lead to improvements of performance into a "normal range", those measures can alleviate negative consequences of prenatal alcohol exposure and relieve daily burdens. CONCLUSION: There are only a few randomized-controlled trials regarding therapy research for children and adolescents with FASD. Their results 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.

Assessing the needs of caregivers of children and adolescents with fetal alcohol spectrum disorders: Results from a survey among families and professionals in Germany.

INTRODUCTION: Caring for individuals with fetal alcohol spectrum disorders (FASD) puts a substantial and often life-long burden on affected families. Caregivers' specific needs and demands are, however, not well understood so far. We thus aimed at systematically collecting data on the needs of individuals caring for children and adolescents with FASD. MATERIALS AND METHODS: Between May 2019 and November 2020, a quantitative survey among caregivers and professionals from across Germany was performed. Participants completed a questionnaire collecting information on the perceived support caregivers receive from various sources as well as the current fulfilment of caregivers' needs. Specifically, the fulfilment of a variety of specific needs summarised in five categories was rated by the participants on a scale ranging from 1 (very good) to 6 (insufficient). RESULTS: Both caregivers and professionals rated the overall fulfilment of needs rather poorly (mean: 3.94 and 4.27, respectively). Caregivers indicated needs concerning coordination of support (4.74) and relief services (4.44) to be fulfilled the least while needs in the relief services category also received the lowest average grade among professionals (4.57). The needs that the caregivers regarded as most sufficiently fulfilled were their own knowledge about FASD (mean: 1.95) and their knowledge about the causes of their child's problems (mean: 1.87). CONCLUSIONS: The results of the present study indicate that FASD caregivers are supported insufficiently, while most of their needs remain unmet. Health care planners and providers thus urgently need to identify and implement measures to better address FASD caregivers' needs and demands.