ABOUT THE STUDY

AYA Cancer Survivor study

Rationale

There is a growing number of young cancer survivors in Canada and very little is known about the late effects of cancer and its treatment during adolescence and young adulthood.

1.3 million

In 2020, approximately 1.3 million adolescents and young adults (AYAs) aged 15 to 39 years were diagnosed with cancer worldwide.

80%

Over 80% of AYAs diagnosed with cancer who are living in high-income countries like Canada become long-term survivors.

Late Effects

Late effects are health problems that occur months or years after a cancer is diagnosed or after treatment has ended.

Aims & Objectives

AYA CSS aims and objectives

Ultimately, the goal is to use the study results to inform and create preventive strategies, policies and care plans that can improve the health and wellbeing of AYA cancer survivors.

The aim of the Alberta AYA Cancer Survivor Study is to understand the survivorship issues and needs of AYA cancer survivors using population health and health services research to:

  1. Describe and quantify the burden of late effects among AYA cancer survivors.
  2. Evaluate patterns of healthcare utilization among AYA cancer survivors throughout their cancer journey.

Alberta AYA Cancer Survivor Study

Cancer survivor study

The Alberta AYA Cancer Survivor Study is a population-based cohort established in collaboration with the Alberta Cancer Registry. All individuals aged 15-39 years diagnosed with a first cancer, excluding non-melanoma skin cancer, in Alberta years during the period of 1983-2017 were included.

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Health burden and healthcare utilization

We linked the Alberta AYA Cancer Survivor Study to population-based registries and administrative health databases to obtain information on second cancers, chronic health conditions, offspring, patient-reported outcomes and death, among other outcomes.

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Treatment information

Since it is important to have detailed treatment information to make clinical recommendations, we have created a nested, sub-cohort of AYA cancer survivors diagnosed from 2000-2017, for whom we have collected detailed treatment information about cumulative doses of radiotherapy and chemotherapy.

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Regular data updates

The cohort is updated at 5-year intervals to add more recently diagnosed AYA cancer survivors. Data linkages are updated at 5-year intervals to add additional follow-up time and update the outcomes of interest. More information can be found here.

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Contact Us

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Alberta Adolescent and Young Adult Cancer Survivor Study

c/o Department of Cancer Epidemiology and Prevention Research
Holy Cross Center – 5th floor
2210 2 St SW
Calgary, AB T2S 3C3
Canada

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