Surveillance of Fetal Alcohol

Syndrome

Why Healthy People gave up

counting

Healthy People

• Healthy People 2000 objective was to

reduce the occurrence of FAS to 1.2 per

10,000 (0.12 per 1,000)

• Healthy People 2010 objective was to

reduce the occurrence of FAS – why?

FAS Prevalence Rates*

1.7

4.2

2.97

0.8.6120.0

0.9 2.2

2.0

3.1

30.0

.37

2.9

.33

8.51.3

.23 3.9

1.4

.67

* Per 1,000 live births

Issues in FAS Surveillance

• Diagnosis is difficult – depends on several

factors

• Diagnosis is difficult in the newborn (>3 yrs)

– facial features may not be evident

– CNS difficult to evaluate

• Lack of training, inconsistent diagnostic criteria

• Clinicians reluctant to make the diagnosis

– Do not want to stigmatize the mothers

– Do not know what to do or where to refer

Assessing Palpebral Fissure

Length

Courtesy of Dr. Luther Robinson

Prevalence of FAS from Various Methods*

Method Pop Years Ages Rate**BMDP US 1981-86 nb 0.07

BDMP US 1992 nb 0.52

MACDP Atlanta 1992 nb 0.33

Multiple Alaska 1977-1992 3-18 yrs 0.3 (3-5)

Clinic-based US-Low SES 70s-90s nb ~2.0

Special Studies Native AM 60s-90s 0-18 2-120

Special Studies South Africa 1990s 6-7 39

School-Based Washington 2001 1st grade 3.1

* Adapted from May et al. Dev Dis Res Rev. 2009;15:176-192) ** per 1,000

Fetal Alcohol Syndrome Surveillance Network

(FASSNet) States

CO

AZ

WI NY

AK

FASSNet Surveillance Region

•Allegany

•Cattaraugus

•Chautauqua

•Erie

•Genesee

•Monroe

•Niagara

•Orleans

•Wyoming

• Genetics clinics (Buffalo & Rochester)

• Early Intervention programs

• Hospitals

• Congenital Malformations Registry (CMR)

• Birth defect surveillance program (NBDPS)

• Developmental Disabilities Clinic in Rochester

• Hospital Discharge Data (SPARCS)

• NYS Vital Records

• Parents and Children Together Clinic; Foster

Care Pediatric Clinic

Data Sources

FAS Prevalence by Race/Ethnicity, 1995-1999,

Using FAS Surveillance Network Methodology

Western New York Erie County Urban Buffalo

Race/

EthnicityLive

Births Cases

Rate

per

1000

Live

Births Cases

Rate

per

1000

Live

Births Cases

Rate

per

1000

Non-Hispanic

White 111,802 33 0.30 44,364 15 0.34 12,047 10 0.83

Black 22,574 43 1.90 10,862 36 3.31 10,165 35 3.44

Hispanic 6,117 1 0.16 1,856 1 0.54 1,530 1 0.65

Amer. Indian/

Native

Alaskan 1,081 2 1.85 366 1 2.73 145 1 6.90

Total ** 145,260 79 0.54 58,757 53 0.90 24,431 47 1.92

* Per 1,000 live births, based on maternal residence at birth

** Includes all racial groups including Asian and Other

NYS FAS prevalence rates with different

methods of detection (3-yr moving average)

a per 1,000 live births

b Congenital Malformations Registry (CMR)

c Fetal Alcohol Syndrome Surveillance Network (FASSNet)

0.00

0.10

0.20

0.30

0.40

0.50

0.60

90-92 91-93 92-94 93-95 94-96 95-97 96-98

3 Year Time Period

P

revale

nce R

ate

(per

1,0

00 b

irth

s)

760.71 by CMR (NYS

excluding Western

NY)

760.71 by CMR (9-

County Western NY)

FASSNet

Initial Ascertainment Source, Erie and Monroe Counties,

New York FASSNet, 1995-1999

Source All Children Children with FAS

Erie Monroe Erie Monroe

Directly Accessible

SPARCS

CMR/NBDPS

Birth Certificates

248 (45.7%)

36 (6.6%)

73 (13.5%)

155 (69.8%)

5 (2.2%)

37 (16.7%)

32 (29.1%)

21 (19.1%)

8 (7.3%)

3 (27.3%)

1 (9.0%)

0 (0%)

Source Provided

Genetics clinic

Early Intervention

Other (physicians,

developmental

clinics, other

clinics)

75 (13.9%)

65 (12.0%)

45 (8.3%)

5 (2.3%)

12 (5.4%)

8 (3.6%)

36 (32.7%)

9 (8.2%)

4 (3.6%)

2 (18.2%)

2 (18.2%)

3 (27.3%)

Total*

Total Children

542 (100%)

420

222 (100%)

208

110 (100%)

53

11 (100%)

10

* Total greater than # of children as they were independently ascertained at more than one source

FAS Abstractions With "Face" Data

by Source, 1995-1999

Source Erie MonroeDirectly Accessible

Hospital Record

CMR/NBDPS

42 (37%)

1 (1%)

6 (30%)

0 (0%)

Source Provided

Genetic Clinic

Early Intervention

Other

43 (38%)

0 (0%)

27 (24%)

3 (15%)

1 (5%)

10 (50%)

Total Children 113 (100%) 20 (100%)

What Might Account for the Differences?

In Monroe county, anecdotal reports that clinicians do not diagnose

FAS and few referrals are made to the geneticist

In Erie county, Dr Robinson, a nationally known expert in FAS,

has established an FAS clinic and performs outreach education and

training

In Monroe county, most referrals come from ‘passive sources’,

fewer referrals come from genetics clinics

Improving Methods for population-based FAS

surveillance, Feb 2008 – Action Items

• Streamline Data Collection items

• Develop QA/Qc measures

• System should use high risk populations

but also broader data collection

• Expand databases – Medicaid, schools..

Improving Methods for population-based FAS

surveillance, Feb 2008 – Action Items

Continued

• Develop and disseminate a clear message

to providers and families on the benefits of

diagnosing FAS (Incentivize the diagnosis)

• Consider focusing on a peak age of

diagnosis

• Increase diagnostic capacity

FASSNet II!!!!• Use a multiple source surveillance methodology to determine the

prevalence of FAS

– Study cohort: 7-9 year olds; Study year: 2010

• Develop a standardized clinical review procedure that will be implemented uniformly by all sites

• Improve or build upon an existing surveillance system to ascertain infants and children with FAS and generate population-based surveillance data

• Establish or expand relationships with facilities where children with FAS are likely to be diagnosed or received services

• Evaluate the surveillance system methodology

– Quality assurance procedures

• Implement provider training and education on FAS to improve case ascertainment

FASSnet II

• Three Sites

– Arizona

– Colorado

– New York

• Building on FASSnet and FASlink

• Adding CNS expertise

• Began abstraction Fall 2010!!

• Clinic-Plus programs, Office of Mental Health

• ECCPASA’s Fetal Alcohol & Drug Effects Program

• Robert Warner Rehabilitation Center

• Special Needs Clinic of WCHOB

• Hodge Pediatrics

• Early Childhood Direction Center

• Native American Community Services

• Hopevale, Inc.

• DePaul Developmental Services (Rochester)

• NYS Office of Children & Family Services

• Unified Court System

• Division of Juvenile Justice & Opportunities for Youth

New York New Data Sources

Closing Thoughts

FAS Surveillance is sensitive to clinician education, interest

and cooperation

Clinicians need to be educated not only in how to make the

diagnosis but why it is important

If you are going to do FAS surveillance, it really helps to have

Dr. Robinson!!!

The more carefully you look for FAS, the more you find