Many childhood cancer survivors do not undergo recommended tests for late effects
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Most childhood cancer survivors are not up to date on guideline-recommended screening for late effects of cancer treatment or second malignancies, according to study results.
The retrospective, population-based study — led by researchers at The Hospital for Sick Children and Women’s College Hospital in Toronto — included data from 3,241 adult survivors of childhood cancer. All had been diagnosed between July 1986 and December 2014.
The cohort included survivors at elevated risk for therapy-related colorectal cancer, breast cancer or cardiomyopathy.
Investigators evaluated longitudinal adherence to Children’s Oncology Group surveillance guidelines and identified predictors of adherence.
Analyses showed 10% of survivors had an elevated risk for colorectal cancer, 7% had increased risk for breast cancer and 99% had higher risk for cardiomyopathy.
Only 13% of those at elevated risk for colorectal cancer and 6% of those at risk for breast cancer were adherent to recommended surveillance as of February 2020. About half (53%) of those at elevated risk for cardiomyopathy were adherent to recommended surveillance.
During median follow-up of 7.8 years, the proportion of time at which each subgroup had been adherent to recommended surveillance was 14% for those at elevated risk for colorectal cancer, 10% for those at elevated risk for breast cancer and 43% for those at elevated risk for cardiomyopathy.
Researchers believe the findings are applicable to the United States, where low screening rates also have been reported.
“We were not surprised by the numbers,” lead author Jennifer Shuldiner, PhD, MPH, scientist at Women’s College Hospital, told Healio. “Based on some of our previous research in Canada and the United States, we know that staying up to date with screening recommendations is a struggle for childhood cancer survivors.”
Healio spoke with Shuldiner about the importance of surveillance screening for childhood cancer survivors, potential explanations for low adherence to surveillance recommendations, and the steps she and her colleagues are taking to improve adherence.
Healio: Why did you conduct this study?
Shuldiner: We knew based on previous research that childhood cancer survivors don't complete the recommended screening tests that can help them stay healthy and identify problems early. Although more than 80% of children newly diagnosed with cancer will become long-term survivors, as many as four of five survivors will develop a serious or life-threatening late effect of their cancer therapy by age 45 years. These late effects include cardiomyopathy, as well as colorectal or breast cancers. As risk-adapted surveillance for late effects can potentially reduce morbidity and mortality, Children’s Oncology Group has published follow-up guidelines for survivors of childhood cancer. Prior research has shown that many survivors do not complete these recommended tests. We wanted to explore adherence to recommended guidelines in the Canadian province of Ontario and determine the risk factors for nonadherence. With better knowledge of this at-risk population, we can design, test and implement appropriate interventions and supports to tackle the issues.
Healio: How did you conduct the study?
Shuldiner: We used administrative databases, and identified childhood cancer survivors who were at risk for three late effects — breast cancer, colon cancer and cardiomyopathy. We then looked at health service use to determine how much time they had been following the recommended guidelines for screening for late effects. We also looked at what characterized those who spent more time keeping up with screening guidelines and who spent less time.
Healio: What did you find?
Shuldiner: Among those at risk for breast cancer, colon cancer and cardiomyopathy, very few were keeping up with screening guidelines. Those who were older at diagnosis were more likely to follow the guidelines, whereas a younger age at diagnosis was associated only with higher likelihood of following screening guidance for cardiomyopathy.
Healio: What are the potential explanations for such low adherence?
Shuldiner: From this study and previous work, we have found a few reasons why keeping up with screening in this population is difficult.
First, childhood cancer survivors who received treatment when they were young might not know what treatment they received or even what type of cancer they had. Without this information, it is impossible to know what screening they should receive.
Second, guidelines are complex, and they also change as we learn more about the effects of treatments survivors have received.
Third, primary care providers often do not have access to which treatments a survivor has received, and they are not aware that screening is recommended. Right now, the burden is on the survivor to know about their screening and inform their PCP.
It is possible that breast cancer screening rates went down because, over time, the recommendations have changed. A mammogram used to be the only test recommended to screen for breast cancer. However, because mammograms can miss some breast cancers, a breast MRI is now also suggested. These are not always easy to get, and this complexity may have reduced overall screening rates.
Healio: Why do you think cardiomyopathy screening adherence exceeded that for breast or colorectal cancers?
Shuldiner: Screening for cardiomyopathy requires an echocardiogram. This test is more readily available and easier to complete than mammograms, breast MRIs or colonoscopies.
Healio: What are the potential long-term implications of your findings?
Shuldiner: We hope this study raises awareness of screening recommendations for childhood cancer survivors. Based on this research and the co-design work we have conducted with survivors, we understand childhood cancer survivors need help to complete recommended tests. We are launching a research trial to see if a provincial-wide support system can help childhood cancer survivors complete these tests. The system involves contacting childhood cancer survivors to see if they would like information regarding screening recommendations and reminders to keep them on track, in addition to sending key information to their family physicians. If the trial is successful, we hope it will be implemented in Ontario.
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For more information:
Jennifer Shuldiner, PhD, MPH, can be reached at jennifer.shuldiner@wchospital.ca.
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