Research finds young adult cancer survivors face gaps in long-term care

Andrea Betts, PhD, assistant professor in the Department of Health Promotion and Behavioral Sciences at the UTHealth Houston School of Public Health in Dallas. (Photo by UTHealth Houston)

Young adult cancer survivors face gaps in follow-up care caused by factors including geographic mobility and insurance changes, according to an analysis by UTHealth Houston researchers.  

While most young adults are navigating college, the workforce, or relationships, survivors face that and more as they learn to manage their long-term health. 

The research was published in the Journal of Cancer Survivorship and led by first author Andrea Betts, PhD, assistant professor in the Department of Health Promotion and Behavioral Sciences at the UTHealth Houston School of Public Health in Dallas. 

Researchers from the AYA National Standards for Cancer Survivorship Care Consortium, led by Betts, reviewed studies across seven states and nine healthcare systems to better understand how survivorship care is delivered and experienced. Individuals enter survivorship from the moment they are diagnosed with cancer through the rest of their life. Follow-up care, also called survivorship care, addresses the unique health risks of cancer survivors, including physical, mental, social, and emotional needs. 

Through surveys, interviews, and focus groups, adolescents and young adults between the ages of 15 and 39 facing survivorship reported that they often do not receive comprehensive survivorship care beyond the evaluation of basic functions, with follow-up care oftentimes neglecting patients’ physical and emotional health needs. 

The National Standards for Cancer Survivorship Care developed by the National Cancer Institute was used as a benchmark to evaluate follow-up care in Betts’ study. The standards emphasize providing comprehensive survivorship care that includes evaluating emotional and psychological support to treat the effects of cancer and its treatment, along with access to the appropriate specialty services to manage late effects of cancer that could develop into chronic conditions. Other key points of care include providing physical therapy, sexual health, and fertility services.  

Clinician assessments also revealed that those who age out of their parents’ health insurance plans at the age of 26 and forced to transition into a new insurance plan are left feeling isolated and with no plan to address pressing healthcare concerns. This makes it more complicated for researchers and healthcare systems alike to get a clear picture of their ongoing health needs and outcomes. 

Researchers also found that geographic mobility tends to create a hindrance to consistent follow-up care and further complicates a health system’s ability to track care over time. When survivors relocate to a new location for college, a job, or with a spouse, key medical information may fall through the cracks, complicating the possibility of successful long-term care.  

Betts knows better than anyone what it feels like to be isolated by your own healthcare journey. As a young adult, she was diagnosed with breast cancer.  

“The treatment experience is so intense, but then when you finish, you’re left trying to understand what just happened to you. At the same time, if you’re a young adult who was treated at an adult hospital, you feel dropped by the healthcare system. You’re told to go back to primary care but often with no guidance for you or your primary care provider on how your cancer and treatment affect you long-term and what kind of follow-up care you need,” Betts said. “We need to change these systems. Adolescents and young adults had toxic treatment to save our lives, and we have a lot of life left to live. The healthcare system needs to support us long-term.” 

Adolescence and young adulthood involve major challenges, including relationships, body image, and figuring out one’s future. Betts’ cancer diagnosis added a life-threatening health challenge on top of many other ongoing life changes.  

Betts and her collaborators’ research stresses the need for more effective ways to track survivorship care across the country as young adults attempt to transition into their new normal. 

The consortium suggests that exploring strengthened data infrastructure systems that allow data sharing could help both clinicians and young survivors better assess survivorship care. 

“It starts with meeting each patient, seeing each patient, hearing each patient, helping them meet their needs during diagnosis and treatment, and continuing that level of care for the rest of their lives so that they feel safe and empowered to care for their health,” Betts said. 

Additional authors include K. Scott Baker, MD, and Jean C. Yi, PhD, of the Fred Hutchinson Cancer Center; Anne H. Blaes, MD, of the University of Minnesota; Katie A. Devine, PhD, of Rutgers Cancer Institute; Erin E. Hahn, PhD, of Kaiser Permanente Southern California; Kimberly A. Miller, PhD, of the University of Southern California; and Helen M. Parsons, PhD, of the University of Minnesota.