AYA-Specific Programs Bridge Gap Between Pediatric and Adult Oncologic Services

Approximately 90,000 adolescents and young adults (AYAs) — persons aged 15 to 39 years — receive a cancer diagnosis each year in the United States. These patients have unique supportive care needs that may go unmet because they often do not fit into specific age-related treatment programs. They are aging out of pediatric oncology while only just approaching eligibility for adult medical oncology.

Although specialized AYA oncology programs are available, most of them are in academic medical centers. Patients who are able to take advantage of these programs escape the difficulties of being caught in a vague area of cancer treatment at traditional facilities. They are able to make decisions about their treatment and stay on it, thus avoiding the downward spiral of poor quality of life leading to lower rates of survival that can affect this age group. Two recent papers addressed care for these adolescent and young adult cancer patients.

Location, Location, Location!

Yes, location matters. The University of Wisconsin Carbone Cancer Center (UWCCC) in Madison treats young adult cancer patients who are ages 19 to 39 years at diagnosis, the largest subpopulation of AYAs.¹ Incidence of invasive cancers among this age group is higher compared with adolescent patients, who for these purposes, are also often too young to consent to research surveys.

Therefore, the medical group at UWCCC conducted a survey to study the impact of residential location on treatment satisfaction and receipt of supportive care among young adults with cancer. Based on prior studies in cancer populations, the UWCCC group hypothesized that the poor survival rates of their young adult patients correlated with the rural location in which they lived. Thirty percent of the state of Wisconsin is described as rural, and UWCCC serves 250,000 people who live more than 15 miles from a hospital.¹

The researchers created a 49-item survey and emailed it to more than 1100 young adult patients with cancer who were treated at UWCCC between March 30, 2019, and March 29, 2020. Patients who lived up to 20 miles from the facility were defined as local; those who lived more than 20 miles away were defined as distant. The researchers also used the USDA 2013 Rural-Urban Continuum Codes,² which distinguish metropolitan counties by the population size of their metro area and nonmetropolitan counties by their urbanization and proximity to a metro area. 

Of 1147 surveys sent, 145 completed surveys were returned. Responses demonstrated that young adult cancer patients from metropolitan residential locations were significantly more satisfied with their treatment than were the patients from rural, nonmetropolitan areas. Distance from the main treatment facility proved to be a significant barrier to satisfaction with supportive care and treatment for AYA patients with cancer.¹