Measuring maternal alcohol consumption and Fetal Alcohol Spectrum Disorder in Canada: A model for national prevalence estimation Ariel Pulver Jocelynn.

Measuring maternal alcohol consumption and Fetal Alcohol Spectrum Disorder

in Canada: A model for national prevalence estimation

Ariel PulverJocelynn CookHolly MacKayJurgen RehmSveltana Popova

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%

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

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Existing studies are outdated, contain numerous methodological limitations

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’)

Project Aims1. Identify data collection methods related

to prenatal alcohol consumption and FASD across jurisdictions in Canada

2. Explore ways to expand existing systems to gather national data about maternal drinking in pregnancy and FASD

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

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

•3 Identified Themes:

1. Data collection in the perinatal period2. Creation/expansion of surveillance

system3. Targeted follow-up of women at risk

Results

Results (cont’)Theme 1: Data collection in the perinatal period

“Prenatally is the place to be”

1. Questionnaire developmentAntenatal record detail

2. Questionnaire implementation

Improved training In-clinic self-report

questionnaires3. Electronic medical records 4. Population-wide meconium

screening

Linked with perinatal database

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

• 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

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

Dedicated billing codes

Coordination of clinics providing FASD diagnoses

Reportable congenital

anomaly/pediatric condition

Targeted follow-up of

at-risk women

• 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

• 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

Model for national prevalence estimation of FASD

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

Acknowledgements

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