Childhood Cancer Surveillance and Control

Objectives:

• Monitor and analyze information on childhood cancer incidence, mortality, treatment, access to care, survival, time trends and geographic patterns: 880 children aged 0-14 years cancer are diagnosed each year in Canada, and 175 die from cancer each year. The most common childhood cancer is acute lymphocytic leukemia.
• Assess the delayed effects of childhood cancer and its treatment.
• Evaluate the economic impact of childhood cancer: the direct cost of treating childhood cancer (age 0-14 years) was estimated at $62 million in 1992. Although childhood cancers cost twice as much to treat per case as adult cancers, survival rates are much higher among children, and successful treatment results in more potential years of life gained.

Treatment and Outcome Surveillance

A surveillance system, initiated in 1995, has been developed at LCDC to monitor treatment and clinical outcome data received from each childhood cancer treatment centre. Approximately 1,000 subjects, each followed up every 6 months, are included in the tracking system, representing roughly 90% of the expected number of cases. LCDC is preparing a first report, which describes patterns in utilization of childhood cancer health care and clinical outcomes in Canada. It is based on data collected on new cases diagnosed in 1995 and 1996.

Late Effects Component of Childhood Cancer

The late effects component of the Canadian Childhood Cancer Surveillance and Control Program (CCCSCP) is a retrospective cohort study collecting data on the psychosocial and physical effects of cancer on children who have survived for at least 5 years, and control subjects. By mid 1999, the national database will include information on 2,000 survivors and 2,000 general population controls. Analyses will be conducted to assess the effects of cancer and its treatment on child development.

Economic Analysis of Childhood Cancers

The CCCSCP component dealing with the financial impact of cancer consists of two projects. The Cancer Burden Study will determine the financial impact of childhood cancer on the family and the use of and access to non-medical care and support for the child and the family. A pilot study of approximately 250 families has begun in British Columbia. The main objective of the Manitoba Economic Impact Study will be to determine the total cost to the Canadian health care system of treating a child with cancer. Analysis of information on approximately 120 children under the age of 15 years has been completed; work is ongoing for young adults aged 15-19 years.

Childhood Cancer Risk Assessment

The etiology component of the CCCSCP includes case-control studies being conducted in Quebec and British Columbia to examine the risk factors associated with childhood cancer. The etiology questionnaire assesses various exposures in the mother, father and child to determine the risk of cancer developing in childhood. To date, questionnaire information has been obtained from approximately 450 cases and 450 controls. This phase will be completed by the year 2000.