RESEARCH

Cohort Characteristics

24,459

survivors

19,221

2-year survivors

14,996

5-year survivors

Cancer Survivor study cohorts

Year of Diagnosis

  • 1983-1987 11% 11%
  • 1988-1992 12% 12%
  • 1993-1997 13% 13%
  • 1998-2002 14% 14%
  • 2003-2007 14% 14%
  • 2008-2012 16% 16%
  • 2013-2017 20% 20%

Years Since Diagnosis

  • 0-5 years 39% 39%
  • 5-10 years 18% 18%
  • 10-15 years 13% 13%
  • 15-20 years 11% 11%
  • 20-25 years 8% 8%
  • 25-30 years 7% 7%

Ongoing Projects

Symptom Burdens and Trajectories among AYA Cancer Survivors

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Patient-reported outcomes can complement traditional sources of data by providing valuable information from the patient’s perspective. In Alberta, patient-reported outcomes are collected at each ambulatory oncology care visit by Cancer Care Alberta using the Putting Patients First survey. All Putting Patient First surveys completed from January 1, 2016, to December 31, 2019, will be obtained to evaluate the wellbeing of AYA cancer survivors.

Objectives:

  • To describe the types of symptoms at diagnosis, and identify demographic and clinical risk factors for a high symptom burden, experienced by AYA cancer patients.
  • To evaluate symptom trajectories during the year following diagnosis among AYA cancer patients.

To compare the symptom burden at diagnosis and 1-year post-diagnosis in AYA cancer patients to older cancer patients.

Oncofertility Care among AYA Cancer Survivors

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Fertility is a top concern among AYA cancer survivors. For this study, the Alberta AYA Cancer Survivor Study cohort will be linked with the only two fertility clinics in Alberta offering fertility care among AYA cancer survivors compared to matched controls. We will then use a population-based, cross-sectional design to survey AYA cancer survivors about oncofertility and sexual health factors. Results of this questionnaire will inform qualitative focus groups to explore experiences and contextual factors that impact AYA cancer survivors’ reproductive choices.

Objectives:

  • To investigate oncofertility care using the following indicators:
    • referral to a fertility clinic,
    • attendance at a fertility clinic,
    • oncofertility services are undertaken,
    • oncofertility-related financial costs;
  • To evaluate patient-reported knowledge, beliefs, concerns, and needs about oncofertility and sexual health; and
  • To explore experiences and contextual factors influencing reproductive choices.

Perinatal Complications and Outcomes Among Female AYA Cancer Survivors

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Previous research has suggested that female AYA cancer survivors experience fewer pregnancies and are at a higher risk of complications when pregnant. In this study, females from the Alberta AYA cancer survivor study will be linked to the Discharge Abstract Database and Alberta Perinatal Health Program to assess perinatal complications and pregnancy outcomes.

Objectives:

  • To compare rates of terminations, stillbirths, and live births in AYA cancer survivors to general population rates;
  • To quantify excess risks of maternal and neonatal complications among AYA cancer survivors and their offspring compared to the general population, and identify related factors for risk stratification; and
  • To identify demographic and clinical risk factors for perinatal outcomes and complications among AYA cancer survivors.

Subsequent Primary Neoplasms among AYA Cancer Survivors

Subsequent primary neoplasms are a known late effect of radiotherapy and certain types of chemotherapy. Data from the Alberta AYA Cancer Survivor Study was linked to the Alberta Cancer Registry to study the risk of subsequent primary neoplasms in this population.

Objectives:

  • To determine the risk of subsequent primary neoplasms among AYA cancer survivors;
  • To compare rates of subsequent primary neoplasms among AYA cancer survivors with cancer rates in the general population; and
  • To identify demographic and clinical risk factors for subsequent primary neoplasms among AYA cancer survivors.

Late Mortality among AYA Cancer Survivors

Late mortality, or death occurring after 5-year survival, is the most severe late effect. Data from the Alberta AYA Cancer Survivor Study were linked to Vital Statistics to determine the risk of premature mortality in AYA cancer survivors.

Objectives:

  • To determine the risk of late mortality among AYA cancer survivors;
  • To quantify the excess risk of premature mortality among AYA cancer survivors compared to the general population; and
  • To identify demographic and clinical risk factors for late mortality among AYA cancer survivors.

Chronic Health Conditions among AYA Cancer Survivors

Cancer therapies are known to cause short-term and long-term damage to various organ systems. In order to assess chronic health conditions among AYA cancer survivors, the Alberta AYA Cancer Survivor Cohort will be linked to the Discharge Abstract Database, National Ambulatory Care Reporting System, and Practitioner Claims databases. Chronic conditions will be assessed using validated algorithms, or the principal chapters of the relevant International Classification of Diseases version where algorithms are not available.

Objectives:

  • To assess the risk of chronic health conditions (e.g., cardiovascular diseases, diabetes, etc.) among AYA cancer survivors;
  • To quantify the excess risks of chronic health conditions among AYA cancer survivors compared to the general population of Alberta; and
  • To identify demographic and clinical risk factors for chronic health conditions among AYA cancer survivors.

Psychiatric Disorders among AYA Cancer Survivors

Previous research has reported an increased prevalence of anxiety disorders, depressive disorders, and distress among AYA cancer survivors compared to the general public or healthy peers. In this study, 5-year cancer survivors from the Alberta AYA cancer survivor study will be linked to the Discharge Abstract Database, the National Ambulatory Care Reporting System, and Practitioner Claims databases to assess the incidence of seven psychiatric disorders (i.e., anxiety, depressive, severe psychiatric, trauma-and-stressor-related, substance use, psychotic including bipolar, and suicide and self-harm attempts) beginning three years after first cancer diagnosis using International Classification of Diseases 9th and 10th Revisions coding algorithms.

Objective:

  • To determine the incidence of common psychiatric disorders amongst five-year survivors of AYA cancer;
  • To quantify the excess risks of psychiatric disorders among AYA cancer survivors compared to the general population of Alberta; and
  • To identify demographic and clinical risk factors for psychiatric disorders among AYA cancer survivors.
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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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