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Lung Transplantation for Cystic Fibrosis

¹ Departments of Mathematics and Biology, and ⁷ Division of Respiratory, Critical Care and Occupational Pulmonary Medicine, Department of Internal Medicine, University of Utah, Salt Lake City, Utah; ² Cardiothoracic Transplant Unit, Great Ormond Street Hospital for Children NHS Trust, London; ³ Portex Unit: Respiratory Physiology and Medicine, UCL, Institute of Child Health, London, United Kingdom; ⁴ Department of Psychology, University of Miami, Coral Gables, Florida; ⁵ Division of Cardiothoracic Surgery, University of Southern California, Los Angeles, California; ⁶ Department of Pulmonary Diseases, Paediatrics and Epidemiology, the Lung Transplant Team, University Medical Center Groningen (UMCG), Groningen, The Netherlands; ⁸ Nuffield College, Oxford, United Kingdom; ⁹ Division of Pediatric Pulmonology, Children's Hospital of Pittsburgh, Pittsburgh, Pennsylvania; ¹⁰ Center for Applied Ethics, Newton, Massachusetts; ¹¹ Department of Pediatrics, Washington University, St. Louis, Missouri; ¹² Cardiothoracic Transplant Team, Division of Pediatric Pulmonology, Children's Hospital of Los Angeles, Los Angeles, California

Correspondence and requests for reprints should be addressed to Theodore G. Liou, M.D., Associate Professor, Division of Respiratory, Critical Care and Occupational Pulmonary Medicine, Department of Internal Medicine, University of Utah, 26 North Medical Drive, Salt Lake City, UT 84112. E-mail: ted.liou{at}utah.edu

ABSTRACT

Lung transplantation is a complex, high-risk, potentially life-saving therapy for the end-stage lung disease of cystic fibrosis (CF). The decision to pursue transplantation involves comparing the likelihood of survival with and without transplantation as well as assessing the effect of wait-listing and transplantation on the patient's quality of life. Although recent population-based analyses of the US lung allocation system for the CF population have raised controversies about the survival benefits of transplantation, studies from the United Kingdom and Canada have suggested a definite survival advantage for those receiving transplants. In response to these and other controversies, leaders in transplantation and CF met together in Lansdowne, Virginia, to consider the state of the art in lung transplantation for CF in an international context, focusing on advances in surgical technique, measurement of outcomes, use of prognostic criteria, variations in local control over listing, and prioritization among the United States, Canada, the United Kingdom, and The Netherlands, patient adherence before and after transplantation and other issues in the broader context of lung transplantation. Finally, the conference members carefully considered how efforts to improve outcomes for lung transplantation for CF lung disease might best be studied. This Roundtable seeks to communicate the substance of our discussions.

Key Words: lung transplantation • survival • quality of life • study design • adherence