Assessing Patient-Reported Outcomes in Pediatric Rheumatic Diseases: Considerations and Future Directions.

ABSTRACT

For children with pediatric rheumatic diseases (PRDs), the inclusion of patient-reported outcomes (PROs) is critical to inform decision making in health care delivery and research settings. PROs are direct reports from a child on their health status, without interpretation by anyone else. PROs improve understanding of the patient experience, allow clinicians to provide patient-centered care, and add value to clinical trials. When PROs cannot be collected directly from the patient, caregiver-proxy reports can provide important information on the child's more observable symptoms and functioning. In this article, we describe the current use of PROs in specific PRDs, align current research with best practice recommendations for both clinical care and research settings, highlight exciting new developments, and identify areas for future research.