This project examines aspects of end-of-life care for people diagnosed with adolescent and young adult cancers (ages 15 to 39 years). Current measures of end-of-life care quality were designed for older adults; a coherent set of measures to characterize high-quality end-of-life care for adolescent and young adult cancer patients does not exist. This study seeks to answer the questions: What is the quality of end-of-life care for adolescents and young adults with cancer, and what is a patient-centered definition of high-quality end-of-life care for adolescents and young adults facing terminal illness? The aims of this project are to examine the quality of end-of-life care in adolescent and young adult cancer patients, identify sources of variation in end-of-life care, and develop a set of indicators of end-of-life care quality suitable for adolescent and young adult cancers. Data from about 1,800 patients diagnosed from 2000 to 2015 with adolescent and young adult cancers in Kaiser Permanente Northern California and Kaiser Permanente Southern California will be included in data-only aspects, with in-depth interviews of patients, family members, and providers from these Kaiser Permanente regions and the Dana-Farber Cancer Institute to better identify factors that may improve end-of-life care quality. This project is led by Dr. Jennifer Mack at the Dana Farber Cancer Institute.
End-of-Life Care for Adolescents and Young Adults with Cancer: An Evaluation of Care and Development of Patient-Centered Quality Measures
Investigator: Kushi, Lawrence
Funder: National Cancer Institute
