Abstract
Adolescents with chronic illnesses have unique and important perspectives on how their illness affects their daily lives. As adolescents are transitioning toward more independent care, measuring their symptoms and the effects of the disease on their daily functioning should be utilized to optimize quality of care. Patient-reported outcomes (PROs), such as health-related quality of life (HRQOL) measures, provide a meaningful tool for obtaining this information. This chapter emphasizes the benefits of utilizing PROs, particularly HRQOL measures, in a clinic setting. Further, we review current trends in PRO development, such as electronic patient-reported outcomes (ePROs). Finally, we address the recent movement toward family-centered care for patients with chronic conditions. Collaborative care is a paradigm in which the patient and physician make critical health care decisions together, which is particularly important for adolescents aiming toward greater independence and autonomy. It is recommended that psychologists, who have a strong background in psychometrics and instrument development, contribute to the development of new PROs and facilitate integration of these measures into clinical trials and family-centered care.