Bioethics research to understand engagement in decision-making among adolescents and young adults with cancer at risk for health care disparities

About This Grant

ABSTRACT This application for an administrative supplement responds to NOSI NOT-OD-25-015: Research and Capacity Building Efforts Related to Bioethical Issues. This proposal plans bioethics research to examine adolescent and young adult (AYA, age 12-29) engagement in decision-making about cancer treatment. The proposal builds on our funded R01, now in year 2, which is designed to evaluate disparities in clinical trial enrollment among AYAs with cancer. The study is being conducted in 3 states, Louisiana, New Mexico, and Tennessee, each of which has a racially, ethnically, socioeconomically, and geographically diverse population. We will leverage the data and infrastructure of the funded R01 to more deeply understand treatment decision-making among AYAs with cancer. Engagement in medical decisions fulfills bioethical principles of autonomy, and our prior work has found that AYAs across the age range express a desire to participate in decisions about their own care. Yet many AYAs report being inadequately engaged in medical decisions. In our prior work, we have identified three main factors that support engagement in decision-making among AYAs: information, voice, and support. AYAs require information about treatment options and possible outcomes; need opportunity to voice their personal preferences, goals, and concerns about treatment; and desire the support of trusted others, such as family members and clinicians, as they make decisions. Together, information, voice, and support allow AYAs to engage in decisions in the way they choose, holding autonomy to the extent desired but also experiencing support and advice from those they trust. The proposed study will allow us to examine these three key attributes of decisional engagement among AYAs with cancer, including differences across a racially and ethnically diverse population, whose needs and experiences with decisional engagement have received limited attention in prior research. We will augment measures and analyses from planned surveys and audiotaped informed consent conversations in the funded R01 in order to answer these fundamental bioethical questions relevant to AYAs with cancer. Aim 1 will use surveys of 200 AYAs to assess the quality of decisional engagement, defined as information, voice, and support, among AYAs with cancer, including differences in engagement by age, race, and ethnicity. Aim 2 will examine interpersonal dynamics of clinical trial conversations with AYAs, drawing on rich data from audiotaped and observed informed consent conversations as well as in depth interviews. The proposed bioethics research supplement will efficiently augment planned data collection in the funded R01 to study decisional engagement, a significant bioethical issue pertinent to AYAs. At the end of this study, we will have assessed the quality of engagement in decision-making across a diverse cohort of AYAs and identified interpersonal dynamics that allow AYAs to feel that their voices are heard. These data will support future work to enhance decisional engagement across a diverse population.