title: Organizational structure and processes in pediatric heart transplantation: a survey of practices.
abstract: Despite emerging literature on pediatric heart transplantation, there continues to be variation in current practices. The degree of variability among heart transplant programs has not been previously characterized. The purpose of this study was to evaluate organizational structure and practices of pediatric heart transplant programs. The UNOS database was queried to identify institutions according to volume. Coordinators from 50 institutions were invited to participate with a 70% response rate. Centers were grouped by volume into four categories. Some institutional practices were dominated by clear volume trends. Ninety-five percent of larger centers routinely transplant patients with known antibody sensitization and report a broader range and acuity of recipients. Ninety-four percent report problems with non-adherence. Sixty-nine percent of centers routinely require prospective crossmatches. There was dramatic variation in the use of steroids across all centers. Sixty-five percent of centers transition adolescents to an adult program. Prophylaxis protocols were also highly inconsistent. This survey provided a comprehensive insight into current practices at pediatric heart transplant programs. The results delineated remarkably variable strategies for routine aspects of care. Analysis of divergence along with uniformity across protocols is a valuable exercise and may serve as a stepping-stone toward ongoing cooperation and clarity for evidence-based practice protocols.
authors.affiliation: Children's Hospital of Wisconsin, Milwaukee, WI 53226, USA. gstendahl@chw.org
authors.forename: Gail
authors.initials: G
authors.lastname: Stendahl
authors.forename: Kathleen
authors.initials: K
authors.lastname: Bobay
authors.forename: Stuart
authors.initials: S
authors.lastname: Berger
authors.forename: Steven
authors.initials: S
authors.lastname: Zangwill
mesh_terms: D000293:Adolescent; D002309:Cardiology / Q000379:methods / Q000458:organization & administration*; D002648:Child; D016208:Databases, Factual; D019317:Evidence-Based Medicine / Q000379:methods; D007722:Health Knowledge, Attitudes, Practice; D016027:Heart Transplantation / Q000379:methods*; D006801:Humans; D007239:Infections / Q000150:complications; D020407:Internet; D017146:Models, Organizational; D010372:Pediatrics / Q000379:methods*; D015203:Reproducibility of Results; D011795:Surveys and Questionnaires