2018 SURVIVORSHIP: Many Young Adult Cancer Survivors Forgo Follow-up Care After Cancer Treatment Ends


Key Points

  • The length of time since a young adult survivor’s final cancer treatment visit was the most significant factor in not scheduling a follow-up appointment.
  • Neither health insurance status nor disease type were predictors of follow-up care adherence.
  • Further research is needed to determine other implicating factors, including age at diagnosis and the type and intensity of cancer treatment the AYA survivor received.

Despite survivorship guidelines from ASCO and other organizations regarding follow-up care after cancer treatment ends, follow-up care is generally lacking for adolescent and young adult (AYA) cancer survivors. Since AYA cancer survivors are at an increased risk for late effects from their cancer treatment, including cardiovascular problems, infertility, and secondary cancers, the lack of regular survivorship care could jeopardize their long-term health. Findings from a new study may shed light on the reasons why many AYAs do not seek a follow-up visit with their oncologist once treatment ends.

The study investigated the proportion of adolescents and young adult cancer survivors who forgo follow-up care after active treatment ends and the barriers to pursuing follow-up care. It found that the longer survivors are from the end of their treatment, the less likely they are to receive follow-up care at a cancer center. Health insurance status and disease type were not predictive factors in follow-up adherence. The study by Beaupin et al is being presented at the Cancer Survivorship Symposium: Advancing Care and Research on February 16–17, 2018, in Orlando, Florida (Abstract 29).

Study Methodology

The researchers analyzed data collected from adolescent and young adult survivors who were treated at Roswell Park Comprehensive Cancer Center by using the institute’s tumor registry. The data included de-identified 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 most common types of cancer among these AYA survivors were leukemia/lymphoma, melanoma, germ cell tumors, and thyroid and breast cancers.

The researchers divided the AYAs among the top five cancer types into two groups: cohort A with 852 people diagnosed between 2010 and 2014 and cohort B with 783 people diagnosed between 2005 and 2009. For their analysis the researchers also included patient-provided information on follow-up physician appointments and insurance status.

Study Findings

The researchers found that the length of time since the survivors’ final cancer treatment was the most significant factor in not scheduling a follow-up appointment, with 48% of the people in the 2005-2009 group not having a follow-up visit in 2016 vs 33% of those in the 2010-2014 group not having a follow-up visit in 2016. The type of cancer survivors were treated for did not make a difference in whether a follow-up visit was sought.

And while health insurance played no role in determining whether the people in the 2005-2009 group sought a follow-up visit, slightly more people without insurance did not schedule follow-up appointments than people with health insurance in the 2010-2014 group, 39% vs 33%, respectively, but the difference was not statistically significant.

The Challenge of Reducing Barriers to Follow-up Care

“What we learned from this [study] is we know that young adults with cancer are at risk for long- and late-term effects from [cancer] treatment,” said Lynda M. Beaupin, MD, Assistant Professor of Oncology at Roswell Park Cancer Institute and the lead author of this study, during ASCO’s press briefing announcing the study results. “However, over 30% of [AYAs] no longer had post-treatment care and the further you are out from finishing cancer treatment, the more unlikely you are to return for a follow-up visit. And that regardless of their cancer type or insurance status, it didn’t have any bearing on predicting who would or would not follow up.”

“For me, the importance of this work is that we have done tremendous work showing that cancer and the treatments for cancer, especially for younger people, can result in long-term health risks,” commented ASCO Expert Timothy Gilligan, MD, MSc, FASCO, moderator of ASCO’s press briefing. “And for a number of those things there are areas where we can help if we intervene, but if we don’t see the patients then we are unable to do that. We also can’t advise on lifestyle factors that might be very important in modifying risks for these patients. So this highlights an important challenge in terms of trying to get cancer survivors to take advantage of what we know and what we can help with.”

Funding for this study was provided by the National Cancer Institute.

Lynda M. Beaupin, MD, has a consulting or advisory role with Spectrum Pharmaceuticals.

The content in this post has not been reviewed by the American Society of Clinical Oncology, Inc. (ASCO®) and does not necessarily reflect the ideas and opinions of ASCO®.