Many adolescent and young adult cancer survivors do not continue to receive follow-up care to reduce their long-term risks after ending treatment, according to a new study.
This suggests that communication between healthcare providers and cancer patients might need improvement, so patients and their families are fully aware of the importance of follow-up care, the study says.
The results of the study, “Come back: Identifying targets to engage young adult survivors who have been lost to follow-up,” will be presented at the 2018 Cancer Survivorship Symposium, set for Feb. 16-17 in Orlando, Florida.
After treatment, cancer patients may still face some challenges related to the disease. Follow-up care is meant to help patients during their physical and emotional rehabilitation, and to detect long-term side effects of the cancer treatment, as well as the possible reappearance of cancer.
Adolescents and young adult cancer survivors have an increased risk for these complications. However, a collaborative study between researchers at Roswell Park Comprehensive Cancer Center in Buffalo, N.Y., and Oakland University William Beaumont School of Medicine in Rochester, Michigan, found that many of them do not continue follow-up care.
The researchers’ previous pilot study consisting of a focus group of 27 young patients showed that the major obstacles to continuing follow-up care included poor communication with their oncologist, loss of health insurance, and ongoing challenges in adjusting to life after cancer.
In the latest study, they investigated how many young patients discontinued follow-up care at Roswell Park Comprehensive Cancer Center, and the reasons behind it. They analyzed data from 2,367 young patients (aged 18 to 39 years) who were diagnosed between 2000 and 2015.
The most common types of cancer were leukemia/lymphoma, melanoma, thyroid cancer, breast cancer, and germ cell tumors, which was expected for this age group. Thirty-seven percent of all patients had no follow-up visits since 2015, and no significant variation across cancer types or insurance status was observed.
Then, researchers divided patients with the five most common types of cancer in two groups: one with 852 individuals diagnosed from 2010 to 2014, and another with 783 who were diagnosed from 2005 to 2009.
The most significant factor determining a follow-up visit was the length of time since end of treatment. Nearly half (48 percent) of patients in the 2005-09 group did not have a follow-up visit in 2016, compared with 33 percent in the 2010-2014 group. As more time passed since the end of treatment, fewer patients were likely to seek follow-up care.
The type of cancer did not make a difference in the follow-up rates, nor did insurance status. However, in the 2010-14 group, slightly more people without health insurance did not have a follow-up visit (39 percent), compared with the ones with insurance (33 percent), but the difference was not statistically significant.
“Doctors and other health care 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,” Lynda Beaupin, MD and the study’s lead author, said in a press release.
“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,” Beaupin added.
Next, researchers want to evaluate other factors that may affect follow-up rates, such as age at diagnosis, type of cancer treatment received, employment status, distance to the cancer center, follow-up visits at other facilities, and patients’ perception about their quality of life. To develop those studies, they are currently working to have access to larger databases.