title: The role of the multidisciplinary health care team in the management of patients with Marfan syndrome.
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.
authors.affiliation: Clinic of Cardiology, University Heart Centre.
authors.forename: Yskert
authors.initials: Y
authors.lastname: von Kodolitsch
authors.affiliation: Clinic of Cardiology, University Heart Centre.
authors.forename: Meike
authors.initials: M
authors.lastname: Rybczynski
authors.affiliation: Marfan Hilfe Deutschland e.V., Zentrumsehstärke.
authors.forename: Marina
authors.initials: M
authors.lastname: Vogler
authors.affiliation: Clinic for Pediatric Cardiology, University Heart Centre.
authors.forename: Thomas S
authors.initials: TS
authors.lastname: Mir
authors.affiliation: Clinic of Cardiology, University Heart Centre.
authors.forename: Helke
authors.initials: H
authors.lastname: Schüler
authors.affiliation: Institute of Human Genetics.
authors.forename: Kerstin
authors.initials: K
authors.lastname: Kutsche
authors.affiliation: Institute of Human Genetics.
authors.forename: Georg
authors.initials: G
authors.lastname: Rosenberger
authors.affiliation: Clinic of Cardiovascular Surgery, University Heart Centre.
authors.forename: Christian
authors.initials: C
authors.lastname: Detter
authors.affiliation: Clinic of Cardiovascular Surgery, University Heart Centre.
authors.forename: Alexander M
authors.initials: AM
authors.lastname: Bernhardt
authors.affiliation: Clinic of Vascular Medicine, University Heart Centre.
authors.forename: Axel
authors.initials: A
authors.lastname: Larena-Avellaneda
authors.affiliation: Clinic of Vascular Medicine, University Heart Centre.
authors.forename: Tilo
authors.initials: T
authors.lastname: Kölbel
authors.affiliation: Clinic of Vascular Medicine, University Heart Centre.
authors.forename: E Sebastian
authors.initials: ES
authors.lastname: Debus
authors.affiliation: Department of Trauma, Hand, and Reconstructive Surgery; Department of Orthopedics.
authors.forename: Malte
authors.initials: M
authors.lastname: Schroeder
authors.affiliation: Clinic of Ophthalmology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany; Smilow Center for Translational Research, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
authors.forename: Stephan J
authors.initials: SJ
authors.lastname: Linke
authors.affiliation: Clinic of Ophthalmology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
authors.forename: Bettina
authors.initials: B
authors.lastname: Fuisting
authors.affiliation: Clinic of Cardiology, University Heart Centre.
authors.forename: Barbara
authors.initials: B
authors.lastname: Napp
authors.affiliation: Department of Legal Medicine.
authors.forename: Anna Lena
authors.initials: AL
authors.lastname: Kammal
authors.affiliation: Department of Legal Medicine.
authors.forename: Klaus
authors.initials: K
authors.lastname: Püschel
authors.affiliation: Diagnostic and Interventional Radiology Department and Clinic.
authors.forename: Peter
authors.initials: P
authors.lastname: Bannas
authors.affiliation: Clinic of Electrophysiology, University Heart Centre.
authors.forename: Boris A
authors.initials: BA
authors.lastname: Hoffmann
authors.affiliation: Clinic of Electrophysiology, University Heart Centre.
authors.forename: Nele
authors.initials: N
authors.lastname: Gessler
authors.affiliation: Department of Orthodontics, Center for Dental and Oral Medicine.
authors.forename: Eva
authors.initials: E
authors.lastname: Vahle-Hinz
authors.affiliation: Department of Orthodontics, Center for Dental and Oral Medicine.
authors.forename: Bärbel
authors.initials: B
authors.lastname: Kahl-Nieke
authors.affiliation: Clinic of Neurology.
authors.forename: Götz
authors.initials: G
authors.lastname: Thomalla
authors.affiliation: Martin Zeitz Center for Rare Diseases.
authors.forename: Christina
authors.initials: C
authors.lastname: Weiler-Normann
authors.affiliation: Strategic Business Development.
authors.forename: Gunda
authors.initials: G
authors.lastname: Ohm
authors.affiliation: Business Unit Quality Management, University Medical Center Hamburg-Eppendorf.
authors.forename: Stefan
authors.initials: S
authors.lastname: Neumann
authors.affiliation: Mühlenberg-Clinic for Rehabilitation, Bad Malente-Gremsmühlen.
authors.forename: Dieter
authors.initials: D
authors.lastname: Benninghoven
authors.affiliation: Clinic of Cardiology, University Heart Centre.
authors.forename: Stefan
authors.initials: S
authors.lastname: Blankenberg
authors.affiliation: Zentrumsehstärke, Hamburg, Germany.
authors.forename: Reed E
authors.initials: RE
authors.lastname: Pyeritz
keywords: Marfan syndrome; health care; management; multidisciplinary; profession; sociology; team