Managing patients with FASD: New report offers clinical guidance
Renee M.Turchi, M.D., M.P.H., FAAP and Vincent C.Smith, M.D., M.P.H., FAAP
AAP Clinical Report
“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
Pediatricians are more aware of the potential effects of prenatal alcohol exposure
after the release of the 2015 AAP clinical report Fetal Alcohol SpectrumDisorders (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
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
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
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.