Inpatient Hospital Care of Children with Trisomy 13 and Trisomy 19

Official Title: Inpatient hospital care of children with trisomy 13 and trisomy 18
Research Lead: Katherine E. Nelson, M.D.
Study Team: Chris Feudtner, M.D., Ph.D., M.P.H., Dingwai Dai, Ph.D.; Kari Hexem, M.P.H.
Supported By: The Children's Hospital of Philadelphia Pediatric Advanced Care Team
Dates: June 2010 – June 2011

Background

Trisomy 13 and Trisomy 18 are generally considered fatal anomalies, with a majority of infants dying in the first year of life, and are associated with defects in multiple organ systems. Despite the conventional understanding of these syndromes as lethal, a number of children are living longer than one year and undergoing medical and surgical procedures as part of their treatment. Children with Trisomy 13 and Trisomy 18 receive significant inpatient hospital care, but the actual hospital care that these patients receive has not been described.

Aims

• To characterize the number and types of procedures performed during inpatient hospitalizations of children with Trisomy 13 and Trisomy 18 in the United States during the years between 1997 and 2006.

Methods

Study Design: Retrospective repeated cross-sectional assessment of hospitalization data from the KIDs’ inpatient database, a representative U.S. data source that includes 80 percent of administrative hospital discharge reports in a plurality of states for the years 1997, 2000, 2003, and 2006.
Population: Children and teenagers birth to 20 years of age.