UICC World Cancer Congress 2006

Objective: The National Cancer Institute's Outcomes Research Branch (ORB) mission is to lead, coordinate and sponsor research to measure, evaluate and improve patient-centered outcomes of cancer care delivery across the cancer care continuum. The ORB leads an active program to enhance the use of patient-reported outcomes (PROs), such as symptoms (e.g., pain) and health-related quality of life (e.g., emotional well-being), to inform decision making for improved patient care in oncology practice.

Methods: The ORB is uniquely positioned as an extramural program to support research to increase the use and value of PROs in oncology practice. This effort includes developing: 1) new PRO measures using advances provided by psychometrics, qualitative research methods, and information technologies to capture the burden of cancer and its treatment throughout all phases of cancer care; 2) a website for quality of life assessment for oncology practice that will provide guidance both for integrating PROs in practice and for addressing technical, cultural, ethical, and legal barriers; and 3) prototype PRO software to provide timely, efficient, individualized, private and secure information for monitoring patient progress and improving decision making in oncology practice.

Results: Together, these projects will represent a significant step forward to assist cancer practitioners in their efforts to improve the quality of care. Well-developed PRO systems will better capture patient functioning and integrate that information with other patient data such as medical records with minimal burden on the patient and health provider. Constraints and concerns for utilizing such information as well as feasibility testing will be addressed.