Outcomes research in childhood autoimmune diseases

Abstract

This article provides an introduction to key aspects of outcomes research in pediatric rheumatology, focusing on arthritis. Patient-centered outcomes research addresses questions of interest to multiple stakeholders in order to guide the best health care decisions suited to a particular patient's circumstances and preferences. Discussion includes the importance of maintaining high-quality longitudinal patient registries and use of valid clinical and patient-reported outcome measures. Rapid, reliable translation of research on best practices into clinical care, as facilitated by quality improvement learning networks, leads to timely and meaningful improvement in patient outcomes.

Keywords: Health services research; Outcomes research; Patient outcome assessment; Pediatrics; Quality improvement; Registries; Rheumatology.