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The role of the multidisciplinary health care team in the management of patients with Marfan syndrome

Authors von Kodolitsch Y, Rybczynski M, Vogler M, Mir TS, Schüler H, Kutsche K, Rosenberger G, Detter C, Bernhardt AM, Larena-Avellaneda A, Kölbel T, Debus ES, Schroeder M, Linke SJ, Fuisting B, Napp B, Kammal AL, Püschel K, Bannas P, Hoffmann BA, Gessler N, Vahle-Hinz E, Kahl-Nieke B, Thomalla G, Weiler-Normann C, Ohm G, Neumann S, Benninghoven D, Blankenberg S, Pyeritz RE

Received 11 May 2016

Accepted for publication 19 July 2016

Published 3 November 2016 Volume 2016:9 Pages 587—614

DOI https://doi.org/10.2147/JMDH.S93680

Checked for plagiarism Yes

Review by Single-blind

Peer reviewers approved by Dr Colin Mak

Peer reviewer comments 5

Editor who approved publication: Dr Scott Fraser

Yskert von Kodolitsch,1 Meike Rybczynski,1 Marina Vogler,2 Thomas S Mir,3 Helke Schüler,1 Kerstin Kutsche,4 Georg Rosenberger,4 Christian Detter,5 Alexander M Bernhardt,5 Axel Larena-Avellaneda,6 Tilo Kölbel,6 E Sebastian Debus,6 Malte Schroeder,7,8 Stephan J Linke,9,10 Bettina Fuisting,9 Barbara Napp,1 Anna Lena Kammal,11 Klaus Püschel,11 Peter Bannas,12 Boris A Hoffmann,13 Nele Gessler,13 Eva Vahle-Hinz,14 Bärbel Kahl-Nieke,14 Götz Thomalla,15 Christina Weiler-Normann,16 Gunda Ohm,17 Stefan Neumann,18 Dieter Benninghoven,19 Stefan Blankenberg,1 Reed E Pyeritz20

1Clinic of Cardiology, University Heart Centre, 2Marfan Hilfe Deutschland e.V., Zentrumsehstärke, 3Clinic for Pediatric Cardiology, University Heart Centre, 4Institute of Human Genetics, 5Clinic of Cardiovascular Surgery, University Heart Centre, 6Clinic of Vascular Medicine, University Heart Centre, 7Department of Trauma, Hand, and Reconstructive Surgery, 8Department of Orthopedics, 9Clinic of Ophthalmology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany; 10Smilow Center for Translational Research, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA; 11Department of Legal Medicine, 12Diagnostic and Interventional Radiology Department and Clinic, 13Clinic of Electrophysiology, University Heart Centre, 14Department of Orthodontics, Center for Dental and Oral Medicine, 15Clinic of Neurology, 16Martin Zeitz Center for Rare Diseases, 17Strategic Business Development, 18Business Unit Quality Management, University Medical Center Hamburg-Eppendorf, 19Mühlenberg-Clinic for Rehabilitation, Bad Malente-Gremsmühlen, 20Zentrumsehstärke, Hamburg, Germany

Abstract: Marfan syndrome (MFS) is a rare, severe, chronic, life-threatening disease with multiorgan involvement that requires optimal multidisciplinary care to normalize both prognosis and quality of life. In this article, each key team member of all the medical disciplines of a multidisciplinary health care team at the Hamburg Marfan center gives a personal account of his or her contribution in the management of patients with MFS. The authors show how, with the support of health care managers, key team members organize themselves in an organizational structure to create a common meaning, to maximize therapeutic success for patients with MFS. First, we show how the initiative and collaboration of patient representatives, scientists, and physicians resulted in the foundation of Marfan centers, initially in the US and later in Germany, and how and why such centers evolved over time. Then, we elucidate the three main structural elements; a team of coordinators, core disciplines, and auxiliary disciplines of health care. Moreover, we explain how a multidisciplinary health care team integrates into many other health care structures of a university medical center, including external quality assurance; quality management system; clinical risk management; center for rare diseases; aorta center; health care teams for pregnancy, for neonates, and for rehabilitation; and in structures for patient centeredness. We provide accounts of medical goals and standards for each core discipline, including pediatricians, pediatric cardiologists, cardiologists, human geneticists, heart surgeons, vascular surgeons, vascular interventionists, orthopedic surgeons, ophthalmologists, and nurses; and of auxiliary disciplines including forensic pathologists, radiologists, rhythmologists, pulmonologists, sleep specialists, orthodontists, dentists, neurologists, obstetric surgeons, psychiatrist/psychologist, and rehabilitation specialists. We conclude that a multidisciplinary health care team is a means to maximize therapeutic success.

Keywords: multidisciplinary, Marfan syndrome, health care, team, profession, sociology, management

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