Adherence to Follow-up is Low in Adolescent and Young Adult Cancer Survivors

Adolescent survivors of cancer are less likely to have follow-up visits the longer they are from treatment completion

Although guidelines calling for follow-up after treatment for cancer are in place across the nation, few adolescent and young adult (AYA) survivors take part in follow-up care after their treatment has ended, according to findings from the Come Back study presented on 16 February at the 2018 Cancer Survivorship Symposium in Orlando, USA. 

Lynda M. Beaupin of the Roswell Park Cancer Institute in Buffalo, USA and colleagues conducted this study of young adult cancer survivors who were treated at the Roswell Park Cancer institution but did not continue follow-up care. The study´s two-fold objectives were to determine how many AYAs would be lost to follow up over time and to identify which AYAs are at high risk of being lost to follow-up. 

Using the Tumour Registry the investigators focused on patients having an age at diagnosis between 18 and 39 years of age to create an AYA Survivorship Dataset that included each subject´s current age, gender, the date of diagnosis, cancer type, histology, and the date of the most recent visit. 

The survivors were compiled into one of 2 sets: cohort A, which included 852 patients diagnosed between 2010 to 2014, and cohort B comprising 783 patients diagnosed between 2005 to 2009. The 2 cohorts were compared regarding compliance with follow-up appointments and insurance status. 

More than a third of AYA cancer survivors did not adhere to follow-up 

The most frequently occurring cancer types in both cohorts were leukaemia/lymphoma, melanoma, thyroid cancer, breast cancer and germ cell tumours which were diagnosed in 179 versus 166, 115 versus 105, 141 versus 93, 91 versus 103, and 75 versus 74 patients in cohorts A and B, respectively. 

A total of 2367 AYAs were diagnosed from 2000 to 2015; of these, 37% of patients had no follow-up visit since 2015. 

The poorest adherence to follow-up was seen in cohort B patients who were diagnosed and treated at an earlier time than cohort A subjects. 

The investigators found no significant variation in the patients’ adherence to follow-up across the disease types. 

Unlike the investigators previous study in 27 AYA, which found that the major barriers to follow-up were loss of health insurance, poor communication with their oncologist, and on-going adjustment challenges, this study did not find a relationship between insurance status and follow-up. 

Adherence to follow-up was unaffected by whether the AYAs had insurance coverage. Of patients with insurance coverage, 33% of cohort A and 47% of cohort B survivors had no follow-up visit in 2016 compared to 39% and 46% of cohort A and B patients who were uninsured. 


Health insurance status does not predict AYA cancer survivors´ adherence to follow-up. The type of cancer also did not predict which AYAs were at risk of being lost to follow-up in this study, which found that longer survivors are from the end of their treatment, the less likely they are to engage in follow-up care at a cancer centre. 

The authors called for additional research to determine whether other factors, such as age at diagnosis or the type and intensity of cancer treatment received may be predictive of which AYAs may be lost to follow-up 


No external funding was disclosed.


Beaupin LM, Boldt A, Amato K, et al. Come back: Identifying targets to engage young adult survivors who have been lost to follow-up. Abstract presented at 2018 Cancer Survivorship Symposium, 16-17 February, Orlando, USA.