Psychosocial Needs and Preferences for Care among Adolescent and Young Adult Cancer Patients (Ages 15–39): A Qualitative Study

SIMPLE SUMMARY: Adolescents and young adults (AYAs) are a unique population: they are a diverse group between the ages of 15–39 years with distinct needs and experience numerous developmental milestones during this age range. Notably, AYAs have faced worse outcomes in cancer care, both with shorter survival and worse quality of life compared to children and older adults. Understanding AYAs’ psychosocial, communication and informational needs is crucial to addressing this disparity and improving cancer care delivery. By hearing directly from AYAs, we are able to capture nuances of their experiences and provide clinical recommendations to healthcare providers involved in the care of AYAs with cancer. This study specifically interviewed AYAs with cancer to understand their perspectives, identify needs and to develop recommendations for cancer care delivery and accommodations across the cancer experience. ABSTRACT: Adolescents and young adults (AYAs) require a multidisciplinary approach to cancer care due to their complex biopsychosocial situations and varied developmental maturity. Currently, age and diagnosis determine referral to pediatric or adult oncology, with differing treatment paradigms and service utilization patterns, contributing to suboptimal improvements in outcomes. Understanding the unique perspectives of AYAs is essential to designing patient-centered AYA services. Thus, we conducted six focus groups with AYAs (n = 25) treated by medical or pediatric oncologists to evaluate: (1) the unique experiences of cancer care as an AYA; (2) AYA-specific information needs and communication preferences; and (3) recommendations for service provision, delivery and accommodations for AYAs. Transcripts were analyzed using inductive thematic content analysis and identified six major themes to inform clinically-actionable recommendations and the development of a patient-reported outcome measure: (1) AYAs experience social isolation and loss of independence; (2) AYAs have an uncertain sense of the future and need conversations around survivorship and long-term and late effects; (3) AYAs desire greater control over discussions with their care team; (4) AYAs need additional navigational and social/caregiver supports; (5) AYAs prefer an inclusive AYA space in the hospital; and (6) LGBTQ+ patients experience distinct concerns as AYA cancer patients. These will form the basis for specific and tailored clinical recommendations to improve AYA cancer care delivery.