Ariel Pulver Jocelynn Cook H olly MacKay Jurgen Rehm Sveltana Popova

1. Measuring maternal alcohol consumption and Fetal Alcohol Spectrum Disorder in Canada: A model for national prevalence estimation Ariel Pulver Jocelynn Cook Holly MacKay Jurgen Rehm SveltanaPopova

2. Background • Contribution for national plan for the estimation of maternal alcohol consumption and FASD • Measurement of maternal alcohol consumption: • National surveys • Canadian Maternity Experiences Survey • Canadian Community Health Survey (Canadian Perinatal Health Reports) • National Longitudinal Survey of Children and Youth • Canadian Alcohol and Drug Use Monitoring Survey • Meconium testing (at least 4 times more sensitive as compared to self-report) Maternal alcohol use at any time in pregnancy: 4.1-18.0%, national averages~10%

3. Background (cont’) Estimation of Fetal Alcohol Spectrum Disorder (FASD) • Three existing methods: • Surveillance and record review • FAS 0.85 per 1,000 • Clinic-based studies • FASD 4.8 per 1,000 • Active case ascertainment • FASD 38.2 per 1,000 May et al., 2009

4. Background (cont’) Estimation of FASD prevalence in Canada • General population ~1% • Northern communities ~20% • Special populations ~11% Existing studies are outdated, contain numerous methodological limitations

5. Background (cont’) Challenges in monitoring… • Perinatal alcohol use: • Underreporting by women • Under-documentation by health care practitioners • FASD: • Lack of infrastructure • Diagnoses occur in varied settings • Utilization of diagnostic guidelines • Detection bias

6. Project Aims • Identify data collection methods related to prenatal alcohol consumption and FASD across jurisdictions in Canada • Explore ways to expand existing systems to gather national data about maternal drinking in pregnancy and FASD

7. Methods • Study design: • Qualitative interviews with key informants • Oct 2013-Feb 2014 • Sample: • 12 experts in maternal substance use and/or FASD • 2 MDs, 3 psychologists, 4 nurses, 3 program managers (including 6 PIs) • AB, ON, PEI, NT, YK, MN, NL & LBRD, NS

8. Methods (cont’) • Interview content: • Predetermined open-ended questions • Supplementary questions • Focused on systems/practices to collect alcohol information and FASD, perceived barriers and ways forward • Analysis: • Thematic content analysis framework

9. Results • 3 Identified Themes: • Data collection in the perinatal period • Creation/expansion of surveillance system • Targeted follow-up of women at risk

10. Results (cont’)Theme 1: Data collection in the perinatal period “Prenatally is the place to be” • Questionnaire development Antenatal record detail • Questionnaire implementation Improved training In-clinic self-report questionnaires • Electronic medical records • Population-wide meconium screening Linked with perinatal database

11. Results (cont’)Theme 2: Surveillance of FASD • Billing codes • Reportable congenital anomaly • Extending ages beyond 1st year of life • Canadian Congenital Anomalies Surveillance Network • Reportable pediatric illness • Canadian Pediatric Surveillance Program • Coordination of clinics • Number of diagnoses/clinic

12. Results (cont’)Theme 3: Targeted follow-up • Among higher-risk women • Existing perinatal programs (e.g. CPNPs, Healthy Babies Healthy Children) • Already have great trusting relationships • Many have data collection systems • Include follow-up for FASD • Are able to confirm alcohol exposure from records

13. Model for national prevalence estimation of perinatal alcohol consumption • Collect detail on alcohol use (i.e. frequency, quantity) • Ensure comparability of items between jurisdictions • Provide continued emphasis on health care provider training Antenatal record • Create reminder in Electronic Medical Record system for screening for alcohol use • Work with ongoing linkage/extraction initiatives Electronic medical records • Linkable with perinatal databases of all births • Jurisdictional perinatal database • Jurisdictional congenital anomalies database • Complete in waiting room for perinatal appointments (ob-gyn, family, pediatric) • Include detailed alcohol and substance use items In-clinic self-report forms Meconium screening • Conduct at all or random births • Use encrypted unique identifier for later data linkage • Use opt-out rather than opt-in method for screening

14. Model for national prevalence estimation of FASD Dedicated billing codes • Create and implement second position billing codes to identify assessments for FASD • Monitor through health insurance databases Reportable congenital anomaly/pediatric condition • Extend age of reportable congenital anomalies • Include ages appropriate for all FASD diagnoses, not just FAS • Integrate FASD into Congenital Anomalies Surveillance • Integrate FASD into Canadian Pediatric Surveillance Program Coordination of clinics providing FASD diagnoses • Create centralized system to accumulate assessments and diagnostics from all clinics • At jurisdictional level or national level Targeted follow-up of at-risk women • Utilize safe trusting environment in CPNPs • Discuss alcohol here • Provide FASD follow-up for children

15. Implications • Maternal alcohol and FASD surveillance/monitoring is currently verypoor • Integrated, multi-pronged strategies are needed • Investment from prenatal HCPs is necessary • Utilization of existing database infrastructure is promising • Facilitate prioritization, resource allocation for prevention, management, treatment supports

16. Acknowledgements • Key Informants • Mitacs Accelerate • CanFASD Research Network • Public Health Agency of Canada • Shannon Lange