The Children's National Hospital Outcomes Registry: a plea for a benchmarking tool that provides longitudinal outcomes for patients and families

Abstract

Surgical advancements in paediatric cardiovascular surgery have led to improved survival rates for those patients with the most complex CHDs leading to greater numbers of patients who are living well into adulthood. Despite this new era of long-term survival, our current reporting systems continue to focus largely on using short-term postoperative outcomes as the criteria to both rate and rank hospitals. Using such limited criteria to rate and rank hospitals may mislead the intended audiences: patients and families. The goal of this article is to describe the creation of a local benchmarking report which aims to retrospectively review long-term outcomes from our single centre. This report is updated annually and published on our cardiac surgery webpage in an effort to be as transparent as possible for our patient and family communities.

Keywords: Benchmarking; long-term outcomes; registry.