Surveillance of Fetal Alcohol Syndrome. Why Healthy People gave up counting

Transcription

1 Surveillance of Fetal Alcohol Syndrome Why Healthy People gave up counting

2 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?

3 FAS Prevalence Rates* * Per 1,000 live births

4 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

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6 Assessing Palpebral Fissure Length Courtesy of Dr. Luther Robinson

7 Prevalence of FAS from Various Methods* Method Pop Years Ages Rate** BMDP US nb 0.07 BDMP US 1992 nb 0.52 MACDP Atlanta 1992 nb 0.33 Multiple Alaska yrs 0.3 (3-5) Clinic-based US-Low SES 70s-90s nb ~2.0 Special Studies Native AM 60s-90s Special Studies South Africa 1990s School-Based Washington st grade 3.1 * Adapted from May et al. Dev Dis Res Rev. 2009;15: ) ** per 1,000

8 Fetal Alcohol Syndrome Surveillance Network (FASSNet) States WI NY AK AZ CO

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10 FASSNet Surveillance Region Allegany Cattaraugus Chautauqua Erie Genesee Monroe Niagara Orleans Wyoming

11 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 Data Sources Parents and Children Together Clinic; Foster Care Pediatric Clinic

12 FAS Prevalence by Race/Ethnicity, , Using FAS Surveillance Network Methodology Western New York Erie County Urban Buffalo Race/ Ethnicity Live Births Cases Rate per 1000 Live Births Cases Rate per 1000 Live Births Cases Rate per 1000 Non-Hispanic White 111, , , Black 22, , , Hispanic 6, , , Amer. Indian/ Native Alaskan 1, Total ** 145, , , * Per 1,000 live births, based on maternal residence at birth ** Includes all racial groups including Asian and Other

13 Prevalence Rate (per 1,000 births) NYS FAS prevalence rates with different methods of detection (3-yr moving average) by CMR (NYS excluding Western NY) by CMR (9- County Western NY) Year Time Period FASSNet a per 1,000 live births b Congenital Malformations Registry (CMR) c Fetal Alcohol Syndrome Surveillance Network (FASSNet)

14 Initial Ascertainment Source, Erie and Monroe Counties, New York FASSNet, Source All Children Children with FAS Erie Monroe Erie Monroe Directly Accessible SPARCS 248 (45.7%) 155 (69.8%) 32 (29.1%) 3 (27.3%) CMR/NBDPS 36 (6.6%) 5 (2.2%) 21 (19.1%) 1 (9.0%) Birth Certificates 73 (13.5%) 37 (16.7%) 8 (7.3%) 0 (0%) Source Provided Genetics clinic 75 (13.9%) 5 (2.3%) 36 (32.7%) 2 (18.2%) Early Intervention 65 (12.0%) 12 (5.4%) 9 (8.2%) 2 (18.2%) Other (physicians, 45 (8.3%) 8 (3.6%) 4 (3.6%) 3 (27.3%) developmental clinics, other clinics) Total* 542 (100%) 222 (100%) 110 (100%) 11 (100%) Total Children * Total greater than # of children as they were independently ascertained at more than one source

15 FAS Abstractions With "Face" Data by Source, Source Erie Monroe Directly 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%)

16 What Might Account for the Differences? In Monroe county, most referrals come from passive sources, fewer referrals come from genetics clinics 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

17 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..

18 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

19 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

20 FASSnet II Three Sites Arizona Colorado New York Building on FASSnet and FASlink Adding CNS expertise Began abstraction Fall 2010!!

21 New York New Data Sources 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

22 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 The more carefully you look for FAS, the more you find If you are going to do FAS surveillance, it really helps to have Dr. Robinson!!!