“I did not know alcohol could harm his brain while his mom was pregnant.”
Those are the words of a father unaware that alcohol is a known teratogen and that prenatal alcohol exposure is the etiology of the most common preventable cause of intellectual disability and developmental delay in the U.S.
Fetal alcohol spectrum disorder (FASD) is the umbrella term used to describe a range of preventable conditions, birth defects and intellectual and/or developmental disabilities resulting from prenatal alcohol exposure. Estimates suggest the prevalence of FASD in school-age children is 24-48 per 1,000 children, which is commensurate with the rates of other childhood diagnoses.
Early identification and screening for all developmental disorders including FASDs are instrumental to the overall health and well-being of children. Screening can occur in the medical home during a prenatal encounter, in the newborn encounter or first few months of infancy, during a maternal/pregnancy history or when screening all new patients to the practice. Utilizing a standard script of questions to the caregiver in a “universal screening” approach ensures all patients and families are screened appropriately.
Pediatricians are more aware of the potential effects of prenatal alcohol exposure after the release of the 2015 AAP clinical report Fetal Alcohol Spectrum Disorders (http://bit.ly/2NLThaB). Yet, pediatricians expressed the need for further clinical guidance regarding managing an individual with an FASD within the medical home beyond diagnosis.
The clinical report The Role of Integrated Care in a Medical Home for Patients with a Fetal Alcohol Spectrum Disorder was created to help fill this void. The clinical report aims to do the following:
- foster pediatrician awareness of approaches for screening for prenatal alcohol exposure in clinical practice;
- guide management of children diagnosed with an FASD; and
- summarize resources for FASD management.
The report, from the AAP Committee on Substance Use and Prevention and the Council on Children with Disabilities, is available at https://doi.org/10.1542/peds.2018-2333 and will be published in the October issue of Pediatrics.
Unique needs, range of resources
Individuals with an FASD have some combination of physical stigmata, behavioral issues, functional limitations, educational difficulties and/or sensory challenges. Each person is unique, so management should be tailored to the individual’s medical, behavioral and educational needs.
The clinical report supports pediatricians by discussing the role of care integration, family-centered care, evidence-based treatments and community partnerships; identifying resources; and addressing educational issues. To aid with management, the report includes the following:
- flow diagram for medical home evaluation of FASDs;
- suggested framework for coordinating pediatric care; and
- resources such as:
- mental health resources;
- employment disability services;
- education and disability services;
- medical home and care coordination resources;
- transition to adult-oriented systems; and
- patient- and family-centered care.
Addressing future needs
Care coordination is essential for children and youths with an FASD because numerous services and systems may be needed to optimize their care. Families benefit from sharing in goal-setting and decision-making, identifying resources, and addressing service needs. When age-appropriate, addressing the transition to adult-oriented systems is the standard of care to manage the vocational, educational and other necessary service issues associated with youths with special health care needs and medical complexity like FASD.
Recommendations for pediatricians
- Recognize the prevalence of FASD and the various classifications.
- Screen all infants, children and youths for prenatal alcohol exposure at initial and/or follow-up visits and monitor them for developmental and behavioral issues.
- Employ a preventive approach to alcohol exposure during pregnancy, as no amount of alcohol is safe at any gestational age.
- Consider co-morbid conditions in children with an FASD and use evidence-based screening tools, medication management and behavioral interventions often in collaboration with neurobehavioral clinicians.
- Provide a high-functioning medical home for all children, including those with an FASD, that includes engagement of caregivers and families on goal-setting for patients, care integration, transition to adult-oriented systems and linking to community resources specific to this patient population.
Drs. Turchi and Smith are lead authors of the clinical report. Dr. Turchi is a former member of the Council on Children with Disabilities Executive Committee. Dr. Smith is a former member of the Committee on Substance Use and Prevention and was a lead author of the 2015 clinical report on fetal alcohol spectrum disorders.
