Treatment Decision Making Involvement in Adolescents and Young Adults With Cancer

Investigator: Kimberly A. Pyke-Grimm, RN, MN, CNS
Sponsor: NIH National Institute of Nursing Research

Location(s): United States


This study will contribute to the knowledge base about adolescent and young adult (AYA) cancer patients' involvement in treatment decision making (TDM) about their cancer, within the context of family. AYAs with cancer have experienced minimal improvements in outcomes over the past 5 years and have the highest rates of non-adherence to treatment among cancer patients, potentially leading to relapse and even death. Identifying preferences around TDM involvement is essential to promote healthy behaviors through the development of appropriate clinical interventions that are feasible and effective.

Cancer affects approximately 70,000 people between the ages of 15 and 39 years every year in the U.S. During the past five years, there have been minimal improvements in cancer outcomes in this age group, known as Adolescents and Young Adults (AYAs). Research indicates that non-adherence to treatment in AYAs with cancer can be as high as 60% and can lead to a higher risk of cancer relapse and even death. Open communication, positive family relationships and involvement of the AYA in treatment decisions and illness management support adherence to medical treatment. However, there is limited research exploring younger AYA's (15-21 years) involvement in the treatment decision making (TDM) process. The purpose of the proposed ethnographic study is to examine the process of TDM in AYAs with cancer and to explore how AYAs make treatment decisions within the context of family. The aims of this study are to: 1) Describe the AYAs preference for involvement in their cancer TDM, including factors that influence TDM about their cancer; 2) Explore the types of treatment decisions in which AYAs do and do not want to be involved; and 3) Examine how AYAs interact with family, especially parents, in making treatment decisions. Twenty to twenty-five AYAs with cancer, ages 15-21 years, will be recruited from two pediatric quaternary care facilities in the San Francisco Bay area to participate in this study. Bronfenbrenner's Ecological Theory of Human Development and Degner's Control Preferences Construct on Decision Making will provide the theoretical underpinnings for the development of the interview guide. The interviews will explore aspects of decisions related to AYA's treatment, their preferred and actual role in making decisions, and how they interact with family to make decisions. The knowledge gained from this study will provide the evidence base for understanding AYA's preference in TDM related to their cancer treatment. Understanding their preferences is key to changing how we deliver care to improve the patients' participation in decision making, satisfaction with the process, compliance with the therapeutic plan and ultimately to improve outcomes. This information will contribute to the development of interventions and services for supporting the AYA and family in this process.