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.

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.