Assessing the Health Care Needs of Adolescent and Young Adult Cancer Patients and Survivors

BACKGROUND. Improvements in cancer outcomes observed for the United States population as a whole are not experienced as such by adolescent and young adult (AYA) patients. The objective of this study was to identify important health and supportive care needs for AYA patients and survivors. METHODS. Forty oncology health professionals and 37 young adults (ages 18 years to 44 years; diagnosed between ages 15 years and 39 years) participated on a modified Delphi panel. Over 3 iterative rounds of mailed surveys, participants identified, rank ordered, and rated the importance of various items. RESULTS. Overall, there was general agreement among health care providers and young adult survivors, with some notable exceptions. Providers and young adult survivors agreed on the relative importance of having adequate health insurance and oncology care that addresses the unique developmental characteristics of this population. Compared with health professionals, young adults ranked the importance of opportunities to meet other young adult survivors at a relatively higher level, and they also ranked those opportunities higher than the importance of support from family and friends. CONCLUSIONS. These findings provide oncology professionals and young adults with insight into the others’ values and perspectives. These findings also suggest areas in which to target investments of resources to promote quality health care and appropriate informational and supportive care services and to overcome the deficit in survival improvement that has occurred in young adults and older adolescents with cancer.