Identifying and understanding how to address the gaps in care experienced by adolescent and young adult cancer patients at UIHC.

Abstract

e18238 Background: Cancer survival rates for adolescents and young adults (AYAs) have not improved at the same rate as other age groups. According to the National Cancer Institute, these patients may fall into a gap between pediatric and adult practices. In an effort to counteract the decreased survival rates of AYAs, the Stead Family Children’s Hospital and the Holden Comprehensive Cancer Center joined forces to develop an AYA cancer program at the University of Iowa Hospitals and Clinics. Methods: The target population included patients aged 13-31 treated for malignancy in one of the following diseases or disease sites: central nervous system, leukemia, lymphoma, neuroendocrine, sarcoma, thyroid, and other. Four focus groups were held to identify and describe gaps in care, as well as provide suggestions for program development. A convergent-parallel mixed-methods design was used. Qualitative data were derived from focus group discussion and selected free-response survey questions, while quantitative data were derived from objective survey questions. Both quantitative and qualitative analyses were conducted to gain targeted feedback from participants. Results: Across the four focus groups, the number of participants ranged from 8 – 19 (n = 24). Topics discussed included: communication, treatment experience, overall AYA program; finances, work, school, late effects; relationships, emotions, spirituality; and body image, infertility, sexuality, risky behavior, and suicide. The results of the analyses found three unique domains that are important to AYAs across the cancer continuum: autonomy, communication, and relationships. The three primary domains make the AYA population different from traditional adult or pediatric populations. The surveys corroborated the focus group discussion findings. Conclusions: Information obtained from these analyses have been used to inform specific projects within the development of the AYA program to address patient-identified gaps. For AYAs, the importance of autonomy, communication, and relationships should be considered when developing an AYA program, as well as for potential policy or health services research utilization in the future.