No Follow-up in More Than a Third of AYA Cancer Survivors

Roxanne Nelson, RN, BSN

February 13, 2018

Adolescents and young adult (AYA) cancer survivors face a high risk for long-term health problems, but many do not continue with follow-up care after their primary treatment has ended, a new study suggests.

The researchers found that 37% of AYA cancer patients had no follow-up visits. The finding comes from a large cohort of more than 2300 AYA patients who were diagnosed with cancer between 2000 and 2015. There were no significant differences with respect to cancer type or insurance status.

"Young adults with cancer are at risk of long-term and late effects from treatment," said lead study author Lynda M. Beaupin, MD, an assistant professor of oncology at the Roswell Park Cancer Institute in Buffalo, New York. "Over 30% of young adults treated for cancer no longer have continued posttreatment care.

"The further you are out from finishing cancer treatment, the more unlikely you are to return for a follow-up visit," she explained. "Follow-up rates also did not vary across cancer types or insurance status."

Beaupin presented her findings at a press briefing held in advance of the upcoming Cancer Survivorship Symposium (CSS) Advancing Care and Research, in Orlando, Florida.

Can't Intervene Without the Patient

"This study highlights an important challenge in getting cancer survivors to take advantage of what we know and what we can help with," commented Timothy Gilligan, MD, FASCO, presscast moderator.

"We can intervene and provide treatment" for a number of the long-term health risks seen after a cancer diagnosis, "but if we don't see the patients, we are unable to do that," he commented.

Gilligan, who is also a medical oncologist at the Cleveland Clinic in Ohio, also noted that lifestyle factors can be important in modifying some of these health risks, but again, they can't be discussed with the patients if they don't come for follow-up.

Increased Risk for Long-term Health Problems

AYA cancer survivors are at increased risk for a number of long-term health problems, including cardiovascular disease, infertility, poor mental health, and secondary cancers related to their treatment.

Previous studies have found that AYA survivors may not be receiving adequate follow-up care, as previously reported by Medscape Medical News. For instance, one study found that fewer than half of AYA survivors of Hodgkin's lymphoma receive the critical components of survivorship care.

The high cost of cancer care, even with the Patient Protection and Affordable Care Act, has presented a barrier to many AYA survivors in making essential physician visits.

Beaupin noted that her group has investigated the reasons behind the lack of follow-up. A focus group comprising 27 AYA patients (aged 18 to 39 years) found that the major barriers to follow-up included loss of health insurance, poor communication with their oncologist, and ongoing adjustment challenges.

Length of Time Significant

The latest study by Beaupin and colleagues was conducted on a cohort of 2367 AYA patients who were diagnosed between 2000 and 2015 and were treated at Roswell Park Comprehensive Cancer Center. The most common types of cancer were leukemia/lymphoma, melanoma, germ cell tumors, and thyroid and breast cancers, which are the most common cancer types observed in this age group.

The authors divided the survivors into two groups: Group A included 852 individuals diagnosed from 2010 to 2014, and group B included 783 who were diagnosed from 2005 to 2009.

"Across all cancer types, 37% of patients had no clinical contact since 2015," said Beaupin.

The researchers found no significant variation across cancer types.

Beaupin pointed out that the length of time since the patients' final cancer treatment visit was the most significant factor in not scheduling a follow-up appointment. Nearly half (48%) of patients in group B did not have a follow-up visit in 2016, compared with 33% in group A.

They also noted that health insurance did not appear to play a role for group B. In group A, slightly more AYA patients who lacked insurance did not schedule follow-up appointments compared with those with health insurance (39% vs 33%), but the difference was not statistically significant. Regardless of insurance coverage, 33% of patients in group A and 48% in group B did not receive follow-up care in 2016.

The study was supported by the National Cancer Institute of the National Institutes of Health. Dr Beaupin has a consulting or advisory role with Spectrum Pharmaceuticals. Dr Gilligan has a relationship with Wellpoint.

Cancer Survivorship Symposium (CSS) Advancing Care and Research. Abstract 29, to be presented February 16, 2018

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