CARING FOR PATIENTS WITH PRENATAL ALCOHOL EXPOSURE: A NEEDS ASSESSMENT

Main Article Content

Vincent C. Smith
Phillip Matthias
Yasmin N. Senturias
Renee M. Turchi
Janet F. Williams

Keywords

fetal alcohol syndrome, fetal alcohol spectrum disorder, needs assessment

Abstract

Background


Prenatal alcohol exposure (PAE) is the United States’ most common preventable cause of birth defects and intellectual and developmental disabilities collectively referred to as Fetal Alcohol Spectrum Disorders (FASD).


Objective


This study was designed to identify gaps in pediatric providers’ knowledge and practices regarding FASD patient identification, diagnosis, management and referral, and to inform needs-based FASD resource development.


Methods


Pediatric providers (pediatricians, trainees, nurse practitioners) were exposed to survey links embedded in newsletters electronically distributed to the membership of two national professional societies. Survey responses were compiled and analyzed using descriptive statistics.


Results


Of the 436 respondents, 71% were pediatricians and 88.2% suspected that a child in their practice could have an FASD. Only 29.2% of respondents felt “very comfortable” diagnosing or referring an individual with suspected FASD. Merely 11.5% were satisfied with their current FASD knowledge base and practice behaviour. Most respondents (89.6%) indicated online continuing education courses as preferred learning method and suggested their knowledge and practices would be best enhanced through FASD-specific diagnostic and referral checklists or algorithms, and patient education brochures and fact sheets.


Conclusions


This study showed that few respondents were satisfied with their current FASD knowledge or practice behaviours. Continuing FASD education, particularly through online courses, was strongly desired. To maximize FASD recognition and optimize care for patients with FASDs, pediatric care providers must ensure that their FASD knowledge base, practice skills and provision of medical home care remain current.

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References

1. Bertrand J, Floyd RL, Weber MK, et al. National Task Force on FAS/FAE. Fetal Alcohol Syndrome: Guidelines for referral and diagnosis. Atlanta, GA: Centers for Disease Control and Prevention; 2004. http://www.cdc.gov/ncbddd/fasd/documents/FAS_ guidelines_accessible.pdf. Accessed March 17, 2015.
2. US Surgeon General Releases Advisory on Alcohol Use in Pregnancy. February 21, 2005. Available at: http:// come-over.to/FAS/SurGenAdvisory.htm. Accessed August 21, 2015.
3. Elek E, Harris SL, Squire CM, et al. Women’s knowledge, views, and experiences regarding alcohol use and pregnancy: opportunities to improve health messages. Am J Health Educ 2013;44(4):177–190.
4. Centers for Disease Control and Prevention (CDC). Alcohol use and binge drinking among women of childbearing age—United States, 2006–2010. MMWR Morb Mortal Wkly Rep. 2012;61(28):534–538.
5. Lupton C, Burd L, Hardwood R. Cost of fetal alcohol spectrum disorders. Am J Med Genet C Semin Med Genet. 2004;127C(1):42–50.
6. May PA, Gossage JP, Kalberg WO, et al. Prevalence and epidemiologic characteristics of FASD from various research methods with an emphasis on recent in-school studies. Dev Disabil Rev. 2009;15(3):176–192.
7. Chudley AE. Fetal alcohol spectrum disorder: Counting the invisible – mission impossible? Arch Dis Child. 2008;93:721–22.
8. Fox DJ, Pettygrove S, Cunniff C, et al. Centers for Disease and Prevention (CDC). Fetal alcohol syndrome among children aged 7-9 years - Arizona, Colorado, and New York, 2010. MMWR Morb Mortal Wkly Rep. 2015; 64(3): 54–57.
9. May PA, Baete A, Russo J, et al. Prevalence and characteristics of fetal alcohol spectrum disorders. Pediatrics. 2014;134(5):855–866.
10. Williams JF, Smith VC. American Academy of Pediatrics Committee on Substance Abuse. Fetal alcohol spectrum disorders. Pediatrics. 2015;136(4):e1395–e1406.
11. Chasnoff IJ, Wells AM, King L. Misdiagnosis and missed diagnoses in foster and adopted children with prenatal alcohol exposure. Pediatrics. 2015 Feb;135(2):264–70.
12. Gahagan S, Sharpe TT, Brimacombe M, et al. Pediatricians’ knowledge, training, and experience in the care of children with fetal alcohol syndrome. Pediatrics. 2006;118;e657–e668.
13. Hagan JF, Shaw JS, Duncan PM, eds. Bright Futures: Guidelines for Health Supervision of Infants, Children, and Adolescents, 3rd ed. Elk Grove Village, IL: American Academy of Pediatrics; 2008.
14. Levy S, William JF. American Academy of Pediatrics, Committee on Substance Use and Prevention. Policy statement: Substance use screening, brief intervention, and referral to treatment. Pediatrics. 2016;1238(1):e20161210.
15. Turchi RM, Antonelli R. Council on Children with Disabilities. Patient and family centered care coordination: Integrating care for children and youth across multiple systems. Pediatrics. 2014;133(5):1451–1460.