RESUMO
Introduction: An adolescent and young adult cancer (AYAC) patient is an individual who has received a cancer diagnosis between 15 and 39 years of age. They require significant survivorship care due to a combination of practical, physical, and mental health problems, but research in these areas is sparse. This study aimed to identify the unmet needs, barriers, and facilitators for conducting AYAC survivorship research in Southern California (SoCal) from the providers' and researchers' perspectives. Methods: A two-round, electronically administered Delphi survey study was conducted, involving a panel of 12 health care professionals and/or researchers with substantial work experience in AYAC. A 10-point Likert scale was used to evaluate 24 areas of unmet needs in AYAC survivors, 39 barriers, and 25 facilitators. Results: The top unmet needs in AYAC survivorship requiring research were in mental health issues, improving school/occupational performance, neurocognitive disorders, subsequent malignant neoplasms, and reproductive health. The top barriers identified were as follows: (1) institutions are too short-staffed to administer survivorship studies; (2) oncologists do not have the time/resources; and (3) lack of available funding. The top facilitators identified were as follows: (1) development of a mechanism/program to fund AYAC survivorship research studies; (2) in-person or virtual investigator engagement between children's hospitals and adult cancer centers to discuss research studies; and (3) developing personalized survivorship goals with AYAC patients and survivors to facilitate enrollment into survivorship studies. Conclusion: Experts identified the lack of time, manpower, funding, and resources as major barriers in AYAC survivorship research. Enhancing communication and collaboration with different stakeholders may facilitate AYAC survivorship research efforts within the SoCal region.
