The “Initiative to Maximize Progress in Adolescent and Young Adult Cancer Therapy” (IMPACT) Cohort Study

Dr. Sumit Gupta, MD, PhD Hospital for Sick Children, Toronto, Canada World Cancer Congress, Paris, Nov, 2016

Outline

Canadian healthcare system

Canadian challenges for AYA with cancer

The IMPACT Cohort Study

Future directions

Canadian Healthcare System Universal healthcare delivered by provinces Single government payer; no private healthcare

delivery for medically necessary services

Challenges for AYA with Cancer

Dispersed population over long distances

Strict age limits for pediatric hospitals, usually 18 years

National taskforce attempting to create and guide AYA cancer policy, but not yet successful

Several individual and local initiatives

IMPACT Cohort

POGONIS

15-18 year olds treated at a pediatric center

Chart Abstraction

15-21 year olds treated at an adult center

Healthcare Data

POGONIS

POGONIS

15-18 year olds treated at a pediatric center

Chart Abstraction

15-21 year olds treated at an adult center

Provincial pediatric oncology registry

Active data collection in each of Ontario’s five childhood cancer centers

About half of 15-17 year olds with cancer

Detailed demographic, disease, treatment and outcome data

Chart abstraction

POGONIS

15-18 year olds treated at a pediatric center

Chart Abstraction

15-21 year olds treated at an adult center

No equivalent AYA resources

Trained chart abstractors obtaining equivalent data on all 15-21 year olds with leukemia, lymphoma, sarcoma, testicular cancer over a 20 year period

Validation of each case individually

Research Potential of Single Health Payer System

All physician encounters result in a billing record submitted to Ontario government with fee codes and diagnosis codes

Each hospital admission results in a record with diagnosis, procedure and outcome codes

Equivalent records for ER, outpatient, and home care visits

Physician Billings

Hospital Discharges

Home Care

Vital Statistics

Ontario Cancer Registry

Citizenship and Immigration Canada Database

Uses of Population-Based Healthcare Data

Clinical events like relapse, second cancers

Long term outcomes

Pre-diagnosis healthcare use and diagnostic delay

Planned Initial Analyses Predictors of locus of care

Diagnostic delay predictors and consequences

Differences in treatment and outcome by locus of

care

End of life healthcare use

Long term health outcomes and healthcare use

International Collaborations

Acknowledgments IMPACT investigators, abstractors, analysts, students