Cancer Survivorship & Late Effects

Thanks to advances in the treatment and supportive care of children and adolescents with cancer, over 80% will become long-term survivors. Unfortunately, the therapies that lead to cure can also cause long-term side effects, also known as “late effects”. These late effects can include heart and lung problems, second cancers, problems with memory and attention, anxiety and depression, and infertility. As such, it is critical that all survivors of childhood and adolescent cancer receive lifelong follow-up care focused on their specific risks. Our research focuses on specific late effects that develop in survivors and how survivors interact with the health care system as they age. All of our projects have a common goal: to improve the health and quality of life of childhood and adolescent cancer survivors.

Cancer Survivorship & Late Effects of Cancer Therapy

Thanks to advances in the treatment and supportive care of children and adolescents with cancer, over 80% will become long-term survivors. Unfortunately, the therapies that lead to cure can also cause long-term side effects, also known as “late effects”.These late effects can include heart and lung problems, subsequent cancers, problems with memory and attention, anxiety and depression, and infertility. As such, it is critical that all survivors of childhood and adolescent cancer receive lifelong follow-up care focused on their specific risks. Our research focuses on the specific late effects that develop in survivors, and how survivors interact with the health care system as they age. All of these projects have one common goal: to improve the health and quality of life of childhood and adolescent cancer survivors.

PCS²

Preventing Cardiac Sequelae in Pediatric Cancer Survivors (PCS²)

Cancer therapy can place childhood cancer survivors at increased risk for heart disease, which can lead to significant illness or early death. We would like to identify those cancer survivors at highest risk as early as possible and find ways to prevent the progression of heart problems. In our PCS2 study, we used genomics, blood biomarkers, and echocardiography to determine which individuals are at highest risk.

Study status: Recruitment complete, data analyses ongoing

Analyses of our PCS² data showed that many childhood cancer survivors who receive “heart-toxic therapies” have little to no evidence of heart problems during childhood and early adulthood. Other studies have shown that coronary artery disease can occur in survivors who have received specific chemotherapies or chest radiation. As such, we are carried out a study, Blood Vessel Health in Cancer Survivors, to see whether we can detect early signs of blood vessel changes (atherosclerosis) in childhood cancer survivors.

Study status: Data analyses ongoing

In addition, to assess long-term cardiovascular outcomes, we created the PCS² Registry, which captures diagnosis, treatment, and cardiovascular data in patients who were treated with cardiotoxic therapies as children, many of whom are now adults.

Study status: Recruitment and data collection ongoing

Preventing Cardiac Sequelae in Pediatric Cancer Survivors (PCS²)

Cancer therapy can place childhood cancer survivors at increased risk for heart disease, which can lead to significant illness or early death. We would like to identify those cancer survivors at highest risk as early as possible and find ways to prevent the progression of heart problems. In our PCS2 study, we used genomics, blood biomarkers, and echocardiography to determine which individuals are at highest risk.

Study status: Recruitment complete, data analyses ongoing

Analyses of our PCS² data showed that many childhood cancer survivors who receive “heart-toxic therapies” have no evidence of heart problems during childhood and early adulthood. Evidence from other studies has shown that coronary artery disease can occur in survivors who have received specific chemotherapies or chest radiation. As such, we are currently recruiting participants for a Blood Vessel Health in Cancer Survivors study to see whether we can detect early signs of blood vessel changes (atherosclerosis) in childhood cancer survivors.

Study status: Recruitment ongoing, preliminary analyses have begun

In addition, to assess long-term cardiovascular outcomes, we created the PCS² Registry, which captures diagnosis, treatment, and cardiovascular data in patients who were treated with cardiotoxic therapies as children, many of whom are now adults.

Study status: Recruitment ongoing

Childhood Cancer Surveillance Program (ONLOOP)

There are over 14,000 survivors of childhood cancer in Ontario. Unfortunately, the therapy needed to cure their cancer leads to a higher risk for health problems during adulthood, such as new cancers and heart problems. Most adult survivors of childhood cancer do not complete the recommended screening tests to check for these problems. Once these survivors become young adults, most of them are ‘lost’ to the cancer system. Our team is building a surveillance system to ensure that childhood cancer survivors continue to get the follow-up care they need when they transition from the intensive childhood cancer care system to the routine health care system in adulthood.

Study status: In development, recruitment to begin soon

Ontario’s Late Effects Surveillance Program (ONLOOP)

There are over 14,000 survivors of childhood cancer in Ontario. Unfortunately, the therapy needed to cure their cancer leads to a high risk for health problems during adulthood, such as new cancers and heart problems. Most adult survivors of childhood cancer do not complete the recommended screening tests to check for these problems. Once these survivors become young adults, most of them are ‘lost’ to the cancer system. Our team is building a surveillance system that can ensure that childhood cancer survivors continue to get the follow-up care they need when they transition from the intensive childhood cancer care system to the routine health care system in adulthood.

Study status: In development; recruitment to begin soon

ROCCA (Real-world Outcomes of Cancer In Children and Adolescents)

ROCCA leverages Ontario’s and Canada’s unique administrative data to evaluate health and socioeconomic outcomes across the paediatric and adolescent/young adult (AYA) cancer journey, from diagnosis through treatment to survivorship or palliative care.

By conducting innovative and rigorous population-level research, we aim to inform efforts that increase equitable access to high-quality and cost-effective cancer care for children and AYAs in Canada and beyond.

Our research program has three pillars: real-world outcomes, health economics, and data creation and linkage

We strive to communicate our findings to patients and their families, policymakers, and advocacy groups, so they can be used to improve the care provided to children and AYA with cancer and better understanding the long-term impacts of cancer.

ROCCA (Real-world Outcomes of Cancer In Children and Adolescents)

ROCCA leverages Ontario’s and Canada’s unique administrative data to evaluate health and socioeconomic outcomes across the paediatric and adolescent/young adult (AYA) cancer journey, from diagnosis through treatment to survivorship or palliative care.

By conducting innovative and rigorous population-level research, we aim to inform efforts that increase equitable access to high-quality and cost-effective cancer care for children and AYAs in Canada and beyond.

Our research program has three pillars: real-world outcomes, health economics, and data creation and linkage.

We strive to communicate our findings to patients and their families, policymakers, and advocacy groups, so they can be used to improve the care provided to children and AYA with cancer and better understanding the long-term impacts of cancer.

IMPACT

IMPACT Study/ ICES Data Linkage Studies

Compared to children and older adult cancer patients, much less is known about the cancer care that adolescents and young adults (AYA) receive. Through the IMPACT study, we have created a database that includes over 5,000 AYA aged 15–21 diagnosed between 1992–2011 at one of five paediatric cancer centres or at an adult cancer centre (i.e. regional cancer centre or community hospital) in Ontario.

Patients are identified through the Ontario Cancer Registry. Diagnosis, treatment, and outcome data are obtained through POGONIS (Ontario childhood cancer survivor registry) for those treated at a paediatric centre, and medical records are reviewed for those treated at an adult cancer centre. Linking these data to population-based administrative health databases stored at ICES is allowing our team to address questions related to the care and health outcomes in survivors of AYA cancers.

Study status: Data collection and analyses ongoing

IMPACT Study/ ICES Data Linkage Studies

Compared to children and older adult cancer patients, much less is known about the cancer care that adolescents and young adults (AYA) receive. Through the IMPACT study, we have created a database that includes over 5,000 AYA aged 15–21 diagnosed between 1992–2011 at one of five paediatric cancer centres or at an adult cancer centre (i.e. regional cancer centre or community hospital) in Ontario.

Patients are identified through the Ontario Cancer Registry. Diagnosis, treatment, and outcome data are obtained through POGONIS (Ontario childhood cancer survivor registry) for those treated at a paediatric centre, and medical records are reviewed for those treated at an adult cancer centre. Linking these data to population-based administrative health databases stored at ICES is allowing our team to address questions related to the care and health outcomes in survivors of AYA cancers.

Study status: Data collection and analyses ongoing

CCSS

Childhood Cancer Survivor Study (CCSS)

To evaluate the long-term health outcomes of childhood cancer survivors, we collaborate with The Childhood Cancer Survivor Study (CCSS), a U.S.-led study that has established a large cohort (>24,000) of long-term survivors and sibling controls from 31 centres across North America.

The CCSS cohort allows us to analyze clinical and self-reported data as well as biospecimens from childhood cancer survivors. These data allow us to characterize individuals who are at highest risk for late effects as well as how survivors access the healthcare system.

Childhood Cancer Survivor Study (CCSS)

 

To evaluate the long-term health outcomes of childhood cancer survivors, we collaborate with The Childhood Cancer Survivor Study (CCSS), a U.S.-led study that has established a large cohort (>24,000) of long-term survivors and sibling controls from 31 centres across North America.

The CCSS cohort allows us to analyze clinical and self-reported data as well as biospecimens from childhood cancer survivors. These data allow us to characterize individuals who are at highest risk for late effects as well as how survivors access the healthcare system.

Select Publications

Financial Hardship in Adult Survivors of Childhood Cancer in the Era After Implementation of the Affordable Care Act: A Report From the Childhood Cancer Survivor Study

Developing a Provincial Surveillance and Support System for Childhood Cancer Survivors: Multiphase User-Centered Design Study

Utility of a cancer predisposition screening tool for predicting subsequent malignant neoplasms in childhood cancer survivors.

Adherence to surveillance for second malignant neoplasms and cardiac dysfunction in childhood cancer survivors: A Childhood Cancer Survivor study.

Increased risk of all cardiovascular disease subtypes among childhood cancer survivors: A population-based matched cohort study.

The effect of adopting pediatric protocols on outcomes in adolescents and young adults with acute lymphoblastic leukemia in pediatric vs adult centers: An IMPACT Cohort study.

Selected Publications

Utility of a cancer predisposition screening tool for predicting subsequent malignant neoplasms in childhood cancer survivors.

Medical financial hardship in survivors of adolescent and young adult cancer in the United States.

Adherence to surveillance for second malignant neoplasms and cardiac dysfunction in childhood cancer survivors: A Childhood Cancer Survivor study.

Increased risk of all cardiovascular disease subtypes among childhood cancer survivors: A population-based matched cohort study.

The effect of adopting pediatric protocols on outcomes in adolescents and young adults with acute lymphoblastic leukemia in pediatric vs adult centers: An IMPACT Cohort study.

Adverse mental health outcomes in a population-based cohort of survivors of childhood cancer.

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