Identifying and Understanding the Gaps in Care Experienced by Adolescent and Young Adult Cancer Patients at the University of Iowa Hospitals and Clinics.

Abstract

In an effort to counteract the differences in improvement in survival rates of adolescents and young adults (AYA), compared to other age groups with cancer, the University of Iowa Hospitals and Clinics established an AYA cancer program. This study was conducted to gather feedback from AYAs in an effort to generate actionable data for program development. The target population included patients aged 13-31 treated for malignancy in one of the following disease sites: central nervous system, leukemia, lymphoma, neuroendocrine, sarcoma, and thyroid. A series of four focus groups was held to identify and describe gaps in care and provide suggestions for program development. A convergent parallel mixed-methods design was used. Qualitative data were derived from focus group discussion and free-response survey questions, while quantitative data were derived from objective survey questions and electronic medical record data. Across the four focus groups, 24 different AYAs participated, ranging from 8 to 19 individuals per session. Topics discussed included the following: communication, treatment experience, and overall AYA program; finances, work and school, and late effects; relationships, emotions, and spirituality; and body image, infertility, sexuality, risky behavior, and suicide. The results of the analyses corroborated what makes AYAs different from other age groups. The primary theme identified was the unique relationships of AYAs, which can be thought of along a continuum. Information obtained from these analyses has been used to inform specific projects within the development of the AYA program to address patient-identified gaps. For AYAs, the importance of relationships along a continuum should be considered when developing an AYA program, in addition to potential policy or health service research utilization in the future.