Patient-Reported Outcomes Measurement Information System as a Clinical Tool for Capturing the Patient Perspective in Pediatric Inflammatory Bowel Disease: A Narrative Review

Abstract

Inflammatory bowel disease (IBD) is an immune-mediated chronic disease with a significant impact on quality of life. In pediatric patients, diagnosing and managing IBD is particularly challenging, and IBD often presents as a more severe and progressive disease. Patient-reported outcomes (PROs) are measures of treatment and disease management outcomes reported by patients and/or caregivers. These measures evaluate several aspects of disease management from the patient/caregiver perspective, emphasizing the patient’s real-life experience with the disease and its treatment. PROs represent a model of patient-centered care, facilitating better-informed healthcare decisions. The Patient-Reported Outcomes Measurement Information System (PROMIS) was developed to promote the use of PROs among patients with chronic conditions. Its primary objective is to provide PROs for research and clinical practice throughout the lifespan. The PROMIS is a non-disease-specific instrument for both adults and pediatric patients assessing domains of physical, psychological, and social health, as well as quality of life (QOL). These instruments are designed to be applicable to a wide range of chronic diseases. Despite the initial expectation concerning PROs in assessing pediatric IBD outcomes, objective data in this area have only recently begun to emerge. This narrative review, based on a selection of reliable articles recognized by PubMed and Cochrane Library, aimed to identify and summarize previously published evidence of the usefulness of PROs, particularly the PROMIS, in IBD patients and in the pediatric population. We present an updated perspective, including identification of their general applications and most relevant previous studies, in the mentioned areas and identify knowledge gaps.