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 Sveltana Popova

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prevalence in Canada ▫General population ~1% ▫Northern communities ~20% ▫Special populations ~11% Existing studies are outdated, contain numerous methodological limitations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

6. Project Aims 1.Identify data collection methods related to prenatal alcohol consumption and FASD across jurisdictions in Canada 1.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. 3 Identified Themes: 1.Data collection in the perinatal period 2.Creation/expansion of surveillance system 3.Targeted follow-up of women at risk Results

10. Results (cont’) Theme 1: Data collection in the perinatal period “Prenatally is the place to be” 1.Questionnaire development Antenatal record detail 2.Questionnaire implementation Improved training In-clinic self-report questionnaires 3.Electronic medical records 4.Population-wide meconium screening Linked with perinatal database

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

12. 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 Results (cont’) Theme 3: Targeted follow-up

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

14. Dedicated billing codes Coordination of clinics providing FASD diagnoses Reportable congenital anomaly/pediatric condition Targeted follow-up of at-risk women Targeted follow-up of at-risk women Create and implement second position billing codes to identify assessments for FASD Monitor through health insurance databases Create and implement second position billing codes to identify assessments for FASD Monitor through health insurance databases 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 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 Create centralized system to accumulate assessments and diagnostics from all clinics At jurisdictional level or national level Create centralized system to accumulate assessments and diagnostics from all clinics At jurisdictional level or national level Utilize safe trusting environment in CPNPs Discuss alcohol here Provide FASD follow-up for children Utilize safe trusting environment in CPNPs Discuss alcohol here Provide FASD follow-up for children Model for national prevalence estimation of FASD

15. Implications Maternal alcohol and FASD surveillance/monitoring is currently very poor 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