Doctor consults with cancer patient and her father

ORLANDO—Many adolescent and young adult (AYA) cancer survivors don’t continue with follow-up care, according to a new study.

Researchers analyzed nearly 2400 AYAs diagnosed with cancer between 2000 and 2015 and found that 37% of these patients had no follow-up visits since 2015.

The proportion of patients with follow-up visits in 2016 did not vary according to cancer type or insurance status, but it did vary according to patients’ time since last cancer treatment.

These findings were presented at the 2018 Cancer Survivorship Symposium (abstract 29).

“Many adolescents and young adults are unaware of what their long-term risks are after they have finished their cancer treatment,” said study investigator Lynda M. Beaupin, MD, of the Roswell Park Cancer Institute in Buffalo, New York.

“Doctors and other healthcare providers need to be more diligent in letting these patients know about future potential side effects and health risks that could occur based on certain aspects of their cancer treatment.”

In a previous study, Dr Beaupin and her colleagues conducted a focus group discussion with 27 AYAs, ages 18 to 39, to query them about the major barriers that prevented them from seeking follow-up care.

Among the factors mentioned were poor communication with their oncologists, ongoing problems in adjusting to life as a cancer survivor, and loss of health insurance.

As a follow-up to that focus group session, the investigators looked at a larger group of AYAs who were treated at Roswell Park Comprehensive Cancer Center.

The team analyzed data from the cancer center’s tumor registry, which included information on a patient’s current age, age at cancer diagnosis, gender, date of diagnosis, date of most recent doctor visit, and type of cancer.

The investigators also looked at patient-provided information on follow-up doctor appointments and insurance status for 2 cohorts of AYA cancer survivors. Patients in cohort A were diagnosed with cancer between 2010 and 2014, and patients in cohort B were diagnosed between 2005 and 2009.

The most common types of cancer were leukemia/lymphoma, melanoma, germ cell tumors, and thyroid and breast cancers.

Findings

There were 2367 patients, ages 18 to 39, who were diagnosed with cancer between 2000 and 2015.

Thirty-seven percent of these patients did not have a follow-up visit since 2015.

There was no difference in follow-up contact according to cancer type or insurance status. However, length of time since patients’ final cancer treatment was a factor in not scheduling a follow-up appointment.

Regardless of insurance status, 33% of cohort A (diagnosed 2010-2014) and 48% of cohort B (diagnosed 2005-2009) did not have a follow-up visit in 2016.

Among insured patients, 33% of those in cohort A and 47% of those in cohort B did not have a visit in 2016. Among uninsured patients, the percentages were 39% and 46%, respectively.

Next steps

The investigators hope to conduct future studies looking at other factors that may affect AYAs’ willingness to seek follow-up care, such as employment status, distance to a cancer center, whether they are getting tested or treated at a facility other than a cancer center, and how AYAs perceive their current quality of life.

“These patients have the potential to live a normal lifespan, and we need to educate them to become their own advocates so they may receive follow-up care on a regular basis,” Dr Beaupin said.

“We hope they continue to receive that follow-up at an established cancer center that has the facilities to assess cardiac health and provide rehabilitation if needed. There are now established survivorship programs nationwide that can provide follow-up care for those who have completed treatment.”

This study was supported by the National Cancer Institute.

AYA cancer patients lost to follow-up