January 23, 2017
4 min read

Strategies needed to improve childhood cancer survivors’ adherence to long-term follow-up

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Fewer than half of childhood cancer survivors receive recommended long-term follow-up care, according to findings of a study led by researchers at Roswell Park Cancer Institute.

Denise A. Rokitka, MD, MPH, assistant professor in the department of pediatric oncology and director of the pediatric and adolescent cancer survivorship program at Roswell Park, and colleagues examined the follow-up records of 370 adults who survived childhood cancer.

Denise A. Rokitka

Results showed more than 91% of survivors received follow-up care 1 to 5 years after treatment, but that rate declined to 68.5% between 6 and 10 years after treatment. Fewer than half of survivors (47.7%) continued to receive recommended follow-up 11 to 15 years after treatment.

“The vast majority of childhood cancer survivors experience at least one chronic health condition in the years following their cancer diagnosis,” Rokitka said in a press release. “Surveillance for long-term complications allows us to better diagnose and manage chronic health conditions in childhood cancer survivors, and may improve their quality of life. Specialized follow-up care is essential to survivor’s health.”

HemOnc Today spoke with Rokitka about the study findings, what the data mean for practice, and what can be done to improve long-term follow-up care for childhood cancer survivors.

Question: What prompted you and colleagues to conduct this study?

Answer: Not all adult survivors of childhood cancer routinely pursue follow-up care. The aim of this study was to try to assess whether there were certain populations of childhood cancer survivors that were at a higher risk for lack of follow up as they matured. Examining our database and analyzing different social and treatment characteristics allowed us to determine if there were more specific characteristics that could help us to intervene earlier with those patients that were not following up routinely.

Q: What did the overall findings suggest?

A: Overall, we found that by 5 years out, we are already losing up to 25% of patients. By 10 years after therapy, more than 59% of patients were not following-up.

Q: What factors contribute to this?

A: The type of diagnosis seems to be one reason. Patients diagnosed with leukemia and lymphomas were consistently more likely to follow up. Age at diagnosis was another reason. Those who were younger at the time of a cancer diagnosis tended to follow-up better. We also found that those treated with chemotherapy were more likely to follow-up than those who were not, as well as those treated with radiation the further they got from treatment completion. Females were more likely to follow-up during years closer to treatment completion, though as time passed, sex did not play as large a role.

Q: Can you speculate on why certain patients were more likely to follow-up?

A: Some of this has to do with the fact that our patients with leukemia receive chemotherapy for 3 years and, therefore, they may have a stronger relationship with their providers. Because of the frequent contact, these survivors have more reinforcement with regard to follow-up care and possibly more detailed education with regard to long-term complications. For females, I speculate it is probably related to sex. In the general population, we know men do not tend to follow up or adhere to surveillance guidelines as well as females in general medical settings.

Q: Were you surprised by any of your findings?

A: Not particularly. It seems like the adolescent and young adult patients seem to become lost to follow-up and then, at some point, they re-engage in follow-up care. Whether their return is for long-term care or a follow-up visit, it seems like clinically, this age group is at increased risk to discontinue follow-up, either for a period of time or indefinitely. We are trying to focus on this age range to see if there are more specific characteristics related to their lack of follow-up, and what could be done to prevent this drop-off.

Q: What can be done to improve long-term follow-up care in these patients?

A: We just started a transitional visit at Roswell Park. I work with a larger group of pediatric oncologists and I do not see every patient who is diagnosed with cancer in western New York. Therefore, I’ve just begun adding in an additional visit, a long-term care visit. At this visit, I am explaining the survivorship program to patients within that first 6 months of completing therapy. This way, they have an introduction into the survivorship program, as well as more education and information about the importance of long-term follow-up care. For the current survivors, we provide cancer treatment summaries. We try to educate them at every visit about why it is important that they follow-up to make sure that we reach a common goal of staying healthy.

Q: Is there anything else that you would like to mention?

A: One of the reasons why we wanted to find out why people were or were not following up with care was because we know there is a large percentage, approximately 70%, of pediatric cancer survivors who have chronic conditions later on in life. During each follow-up visit, survivors are educated about signs and symptoms that could occur given their specific cancer treatment. They are provided a cancer treatment summary to share with other providers, and they are scheduled for surveillance screening tests, such as echocardiograms or mammograms. It is interesting to look at the general population statistics on mortality alone, which show a 20% decline in mortality in pediatric cancer survivors. We know some of this has to do with disease recurrence, but some of this has to do with secondary cancers, as well as cardiac or pulmonary toxicities. Patients treated for Hodgkin lymphoma are at a 40% increased risk for breast cancer if they have had radiation to the chest. There also are other factors, such as high blood pressure, cardiac disease and pulmonary toxicities. Our goal is to find these diseases at an early state so we can prevent any further failure or decline in health. – by Jennifer Southall


Rokitka DA, et al. J Adolescent Young Adult Oncol. 2016; doi:10.1089/jayao.2016.0023.

For more information:

Denise A. Rokitka, MD, MPH, can be reached at Roswell Park Cancer Institute, Elm and Carlton streets, Buffalo, NY 14263; email: denise.rokitka@roswellpark.org

Disclosure: Rokitka reports no relevant financial disclosures.