Childhood cancer survivors don’t adhere to surveillance guidelines

On March 11, 2024, the Canadian Medical Association Journal published an article evaluating longitudinal adherence to surveillance for childhood cancer survivors, highlighting that many survivors did not adhere to the surveillance recommendations associated with their cancer treatments.  

Using administrative healthcare data from the Pediatric Oncology Group of Ontario Networked Information System, which includes patients in Ontario, Canada, between 1986 and 2014, the researchers conducted a retrospective, population-based cohort study to assess longitudinal adherence and predictors of adherence. The guidelines for patients were based on those set forth by the Children’s Oncology Group.

The study included 3,241 childhood cancer survivors.  Approximately 10% of participants were at an increased risk for colorectal cancer. Additionally, 7% were at risk for breast cancer, and 99% were at an elevated risk for cardiomyopathy.

However, current adherence to the recommended surveillance guidelines was relatively low within each risk group. For example, only 13% of individuals at an elevated risk for colorectal cancer adhered to the recommended surveillance as of February 2020. Within the breast cancer risk group, the adherence rates were even lower at 6%. Finally, only 53% of those at risk for cardiomyopathy engaged in the appropriate surveillance.

In addition to current adherence, the researchers evaluated longitudinal adherence with a median follow-up of 7.8 years. Colorectal cancer surveillance rates were roughly 14%. Furthermore, the rate of adherence among individuals with an elevated breast cancer risk was 10%. Finally, adherence to cardiomyopathy surveillance was 43%.

The low rates of surveillance and adherence to potential risks among childhood cancer survivors suggest that additional changes to guidelines may be necessary. According to the journal, approximately 80% of childhood cancer survivors will experience a severe or life-threatening effect of their treatment, which underscores the importance of following screening recommendations.

“Our findings demonstrate a need to support patients and clinicians to improve adherence to surveillance guidelines among CCS. This responsibility must be shared between the cancer care system, particularly the provincial pediatric cancer survivor network, as well as the patients themselves, through advocacy and other survivor support groups,” concluded the researchers in the publication.