Adolescent and Young Adult Oncology Patients and their Caregivers

Abstract

Nearly 70,000 adolescents and young adults (AYA; ages 15-39) are diagnosed with cancer each year. Despite AYAs being identified in the late 1990s as a biopsychosocially distinct population from children and adults, they continue to experience stagnant survival rates and report complex unmet psychosocial needs. In order to explore the complexity of AYA patients' unmet psychosocial needs, two research articles were completed: (a) a systematic literature review examined which demographic variables are associated with disparities in incidence and mortality rates, access to care, and unmet supportive care needs among young adults with cancer, and (b) a descriptive cross-sectional study examined the interconnectedness of distress and coping among young adults with cancer and their caregivers. The systematic review revealed that some groups of AYA oncology patients, including non-White patients, those without insurance and those who live in neighborhoods with a lower socioeconomic status, experience additional disparities with regard to incidence and mortality rates, access to care, and unmet supportive care needs. The research study revealed that there was a mix of caregivers who provide AYA patients support including parents, spouses, friends, dating partners, and non-parent family members and that coping and distress are interconnected among AYA patients and their caregivers. Results from both articles form the basis for recommendations intended for researchers, healthcare providers, and policy makers in their efforts to improve the biopsychosocial well-being of AYA oncology patients and their caregivers. Recommendations included the need for more dyadic and social network research designs, more clinical and research attention to the caregivers of AYAs, and increased training and education for healthcare providers who care for AYAs.