Strategies for longitudinal follow-up of patients with pediatric and congenital cardiac disease

Meaningful evaluation of the quality of medical and surgical care must include longitudinal follow-up. Long-term evaluation of the outcomes of patients undergoing cardiothoracic operations is a professional responsibility for all who provide care to these patients. Over the past decade, a substantial body of literature has been published related to the potential transformation of short-term clinical registries into platforms for longitudinal follow-up. This transformation will ultimately result in a higher quality of care for all cardiothoracic surgical patients by facilitating outcomes analysis, quality improvement, and clinical and longitudinal comparative effectiveness research on a national and international level. Several potential strategies will allow longitudinal follow-up to be conducted with clinical registries: (1) Linking with Administrative Data; (2) Linking with National Death Registries, such as the Social Security Death Master File (SSDMF) and the National Death Index (NDI); (3) Linking to other Clinical Registries; and (4) Creating Clinical Longitudinal Follow-up Modules.The purpose of this review article is to summarize the current state of the art of strategies for the longitudinal follow-up of patients with pediatric and congenital cardiac disease.