Identification of Children with Fetal Alcohol Syndrome and Opportunity for Referral of their Mothers for Primary Prevention Washington, 1993-1997

Heavy maternal use of alcohol during pregnancy can cause permanent birth defects, including fetal alcohol syndrome (FAS). Although these alcohol-related defects are entirely preventable, the factors associated with maternal use of alcohol during pregnancy are complex and often resistant to change. In addition, not all women who drink heavily will produce children with FAS (1). Although targeting primary prevention efforts to all women at risk for drinking during pregnancy is ideal, limited resources require targeting women at the highest risk for producing children affected by prenatal alcohol exposure. One such population is women who have already given birth to an alcohol-affected child (2). This high-risk population is not easily identified because not all children with FAS have their condition diagnosed, and these birth mothers are often separated from their children during the first few years of the child's life, often before a diagnosis of FAS has been considered. However, once identified, these women are receptive to intervention (3). To identify a population of women at highest risk for a future alcohol-exposed pregnancy through diagnosing a previously affected birth child, researchers at the University of Washington developed the Fetal Alcohol Syndrome Diagnostic and Prevention Network (FAS DPN). This report summarizes the results of this program and documents the feasibility of identifying persons who may have FAS so their condition can be diagnosed and their birth mothers can be identified and referred to prevention services.

FAS DPN opened its first clinical site at the Center for Human Development and Disability (University of Washington Medical Center, Seattle, Washington) in January 1993. Persons suspected of having FAS were identified through referral by various community sources and by directed screening of high-risk populations (4) (Table_1). Patients were then evaluated and their condition diagnosed in a multidisciplinary clinical setting (5), and birth mothers who were still at risk for producing additional affected children were identified, enabling referral to community alcohol treatment, family planning, and maternal advocacy programs (6).

During 1993-1997, there were 3002 requests for appointments for diagnostic evaluations at FAS DPN. To determine the appropriateness of referrals, parents and other caregivers were given a questionnaire (7) asking about the child's developmental and exposure history; 1374 completed the questionnaire. Persons referred for evaluation ranged from birth to middle age; the racial distribution was comparable to the general population in Washington, with a slight overrepresentation of American Indians. Approximately 20% lived with their birth mothers, 20% with other biological family members, and more than 50% with foster or adoptive parents. Although all patients had been seen in the health-care system before referral, only 56 of the 1374 caregivers completing the questionnaire reported that a diagnosis of FAS or related conditions had ever been considered and/or previously recorded in the medical or mental health records of the patient. Most diagnostic requests arose from concerns relating to issues of education and social skills (Table_2).

Because of limited capacity at the FAS DPN clinic, priority for diagnostic evaluation was based on responses to questions regarding in utero alcohol exposure and evidence of organic brain damage (based on previous medical and psychologic test results). Of the 1374 patients whose caregivers responded to the questionnaire, 811 were selected to receive diagnostic evaluations. Patients ranged in age from 0-51 years (mean: 10 years). Of these, 573 (71%) were found to have either documentation of in utero alcohol exposure or signs of organic brain damage; the remaining 238 had both. A total of 39 met the clinical criteria for an FAS diagnosis *, which includes elements of the FAS facial phenotype and growth deficiency in addition to in utero alcohol exposure and organic brain damage. Only one of these 39 had FAS previously diagnosed.

The mothers of the 238 persons with both in utero alcohol exposure and signs of organic brain damage constitute a high-risk population for intervention to prevent subsequent affected offspring. Most (88%) of these women were aged less than or equal to 45 years (i.e., reproductive aged). Although only 51 (21%) birth mothers were living with the affected persons at the time of the diagnostic evaluation, the questionnaire provided sufficient information (i.e., name and location) for FAS DPN to identify 219 (92%) birth mothers.

Reported by: SK Clarren, MD, Dept of Pediatrics, School of Medicine, SJ Astley, PhD, Dept of Epidemiology, School of Public Health and Community Medicine, Univ of Washington, Seattle, Washington. Fetal Alcohol Syndrome Prevention Section, Developmental Disabilities Br, Div of Birth Defects and Developmental Disabilities, National Center for Environmental Health, CDC.

Editorial Note

Editorial Note: This report documents one program's efforts to identify a population likely to have undiagnosed effects of in utero alcohol exposure. The birth mothers of these persons are a high-risk target population for primary prevention, although neither the mothers nor their health-care providers may realize their potential for producing subsequent affected children. The University of Washington is implementing a primary prevention intervention for these women that will rely on identification through early diagnosis of FAS in their children. For most patients in this study, an alcohol-related diagnosis had never been considered in any other medical or mental health setting, and only 22% were referred by a health-care care provider for further diagnostic services. This may be because the syndrome manifests itself in ways that may not be recognized in the traditional medical setting (9). As a result, multidisciplinary diagnostic clinics staffed by a physician, psychologist, language pathologist, occupational therapist, and social worker may facilitate the proper diagnosis of conditions in patients who have not been appropriately identified in other clinical settings.

The effectiveness of this approach relies on primary health-care providers being aware of the importance of diagnostic referral and on the availability of diagnostic resources. In 1993, the American Academy of Pediatrics (AAP) recommended increased awareness among pediatricians and health-care providers of FAS and other alcohol-related effects and the evaluation of children thought to have such conditions by a pediatrician skilled in the evaluation of neurodevelopmental and psychosocial problems (10). This report documents the need for continued efforts to implement these AAP recommendations, including forging stronger communication among parents and health-care providers about prenatal alcohol effects and providing or arranging access to skilled diagnostic assessment. This approach will increase the potential for primary prevention in avoiding subsequent exposures and will be a major protective factor in preventing secondary conditions among affected children (9).

References

1. Abel EL. An update on incidence of FAS: FAS is not an equal opportunity birth defect. Neurotoxicology and Teratology (in press).

2. Abel EL, Sokol RJ. Maternal and fetal characteristics affecting alcohol's teratogenicity. Neurobehavioral Toxicology and Teratology 1986;8:329-34.

3. Astley SJ, Bailey D, Talbot T, Clarren SK. Primary prevention of FAS: targeting women at high risk through the FAS Diagnostic and Prevention Network {Abstract}. Alcoholism Clinical and Experimental Research 1998;22:104A.

4. Astley SJ, Clarren SK. A case definition and photographic screening tool for the facial pheno-type of fetal alcohol syndrome. J Pediatr 1996;129:33-41.

5. Clarren SK, Astley SJ. The development of the fetal alcohol syndrome diagnostic and prevention network in Washington state. In: Streissguth A, Kanter J, eds. The challenge of fetal alcohol syndrome: overcoming secondary disabilities. Seattle, Washington: University of Washington Press 1997:40-51.

6. Grant TM, Earnst CC, Streissguth AP, Phipps P, Gendler B. When case management isn't enough: a model of paraprofessional advocacy for drug- and alcohol-abusing mothers. J Case Management 1996;5:3-11.

7. Astley SJ, Clarren SK. Diagnostic guide for fetal alcohol syndrome and related conditions. Seattle, Washington: University of Washington Publication Services, 1997:93.

8. Institute of Medicine. Fetal alcohol syndrome, diagnosis, epidemiology, prevention and treatment. Washington, DC: Institute of Medicine, National Academy Press, 1996.

9. Streissguth AP, Barr HM, Kogan J, Bookstein FL. Understanding the occurrence of secondary disabilities in clients with fetal alcohol syndrome (FAS) and fetal alcohol effects (FAE). Seattle, Washington: University of Washington Publication Services, 1996.

10. American Academy of Pediatrics. Fetal alcohol syndrome and fetal alcohol effects. Pediatrics 1993;91:1004-6.

The FAS DPN uses a 4-Digit Diagnostic Code (7) that is consistent with the Institute of Medicine guidelines (8), but is a more detailed case definition.

TABLE 1. Number and percentage of patients referred to the Fetal Alcohol Syndrome
(FAS) Diagnostic and Prevention Network, by referral source -- Washington,
1993-1997*
======================================================================================
Referral source              No.       (%)
-------------------------------------------
Social services agencies+    334    (28.0)
Medical-care providers       267    (22.4)
Mental-health providers      184    (15.4)
FAS support organizations    147    (12.3)
Self referrals               124    (10.4)
School personnel              64    ( 5.4)
Lawyer or judge               23    ( 1.9)
Other                         49    ( 4.1)
-------------------------------------------
* Among the 1192 (87%) caregivers who responded to this question.
+ Includes persons identified through photographic screening of high-risk populations.
======================================================================================

TABLE 2. Number and percentage of reasons for referral to a fetal alcohol syndome
(FAS) diagnostic and prevention clinic* -- Washington, 1993-1997
=======================================================================================
Reason                                            No.       (%)
-----------------------------------------------------------------
Problem with adaptation
 Conduct disorders, extreme anger                 579    (45.8)
 Poor judgement, cannot function independently    241    (19.1)
 Poor self control, disorganized, unpredictable   238    (18.8)
 Poor social skills                               147    (11.6)
 Poor parenting skills by patient                   9    ( 0.7)
Problem with learning in school
 Learning disabilities, cognitive delays          400    (31.7)
 Poor memory, does not learn from experience      117    ( 9.3)
 Speech and language problems                      99    ( 7.8)
 Short attention span                             360    (28.5)
Mental health concerns
 Depression, low self esteem                       91    ( 7.2)
Medical concerns
 Face suggests a syndrome                         138    (10.9)
 Poor growth                                       40    ( 3.2)
 Minor neurologic concerns                         80    ( 6.3)
 Physical or health concerns                      122    ( 9.7)
Concerns about exposure
 Knowledge of alcohol exposure in utero           164    (13.0)
 Ongoing drug/alcohol abuse by patient             31    ( 2.5)
Other
 Relation of possible FAS to a legal matter        32    ( 2.5)
 Relation of possible FAS to placement             24    ( 1.9)
 Patient with possible FAS is pregnant              1    ( 0.1)
-----------------------------------------------------------------
*Among the 1260 (92%) caregivers who responded to this question. The caregiver could list
more than one concern.
=========================================================================================

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