End-of-life care quality for adolescents and young adults with cancer: Including the patient voice in quality assessment - ABSTRACT. The proposed study is a first competitive renewal of a 5-year U01 award to examine end-of-life (EOL) care quality for adolescents and young adults (AYAs) with cancer. AYAs with cancer are a growing population with unique needs and vulnerabilities. At an age when the world should be opening to them, AYAs with advanced disease face the profound losses inherent in a life cut short. Research into their EOL care experiences has been limited, hindering development of care models and interventions to support AYAs facing untimely death. In our first funding cycle, we engaged AYAs with advanced cancer, family caregivers, and clinicians to define EOL care quality for AYAs. Measures developed for older adults center on aspects of care delivery like hospitalizations and use of hospice. In contrast, AYAs’ priorities focused on the extent to which care met their personal preferences, including support of relationships, information needs, and attainment of life goals. We used results to develop a novel set of EOL care quality measures centered on the unique needs of AYAs, including a survey to allow for patient reports across all 32 quality measures in 7 broad domains. We now propose to build on this work to measure AYAs’ EOL care quality, as they themselves define it, with a special focus on Black, Asian, and Hispanic AYAs. We will, first, measure the quality of care received by AYAs living with advanced cancer using our newly developed patient-centered quality measures (Aim 1). We will survey 500 AYAs from 4 sites who are living with relapsed or stage IV cancer, with surveys administered prospectively every 3 months for 1 year or until death. Findings will be used to identify areas of deficiency in quality, a needed step to inform targeted interventions. Second, we will examine care quality and barriers to high quality care experienced by Black, Asian, and Hispanic AYAs (Aim 2). We will assess disparities in patient- centered care quality from Aim 1 surveys by race and ethnicity, and perform in-depth interviews among Black, Asian, Hispanic, and White AYAs to identify barriers to high quality care. Finally, we will develop a process to implement patient-reported quality measures into clinical workflows, allowing patients to report on experiences and conveying results in real time to clinical teams (Aim 3). We will work with AYAs, caregivers, and clinicians to answer key questions about the optimal timing and frequency of assessment and best methods for reporting results to clinical teams, to facilitate future wider scale implementation and ensure that quality measures can inform care for AYAs living with advanced disease. Throughout the study, we will leverage the strengths of our productive team, robust research sites, engaged stakeholders, and diverse patient population. At the end of the award period, we will have assessed the quality of care for AYAs with advanced cancer as they themselves define it, identified special barriers faced by historically marginalized populations, and developed a process for implementation of patient-centered quality measures into clinical workflow. We will be prepared to develop responsive interventions to improve care and mitigate disparities for AYAs with advanced disease.
