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

Figures & data

Figure 1 Maximizing therapeutic success requires maximizing success in three dimensions comprising i) biology of disease and patient’s physical make-up, ii) norms with conformity of therapy with patient’s autonomy, with medical guidelines, and laws, and iii) emotions including the patient’s motivational support of therapy. The extent to which therapy is maximized in an individual patient corresponds to the areas of the red and black triangles in the graph. Usually, therapy according to standard is unable to maximize therapeutic success because it fails to accommodate biological individuality such as comorbidity, or the patient’s autonomy by neglecting his or her will, or because it fails to obtain the patient’s motivational support. Information from previous studies.^13,23,115

Table 1 Organizational structures of the Hamburg multidisciplinary center for patients with Marfan syndrome and other genetic aortic diseases

Structure element	Criteria and demands	Current practice
Structures of the University Medical Center Hamburg-Eppendorf (UKE)
External quality assurance (EQA)	German federal law requires monitoring and reporting of procedural results and complications of inpatient care (§ 135a SGB V) for several tracer diagnosis and procedures	Our university medical center assesses, analyzes, and publishes external quality assurance data
Quality management (QM) system	German law demands hospitals to introduce and maintain quality management systems (§ 135a SGB V)^Citation101	Our university medical center has a quality management system certified according to DIN ISO 9001,^Citation116 where we 1) define all core processes by writing and updating SOPs, 2) define quality goals, 3) monitor quality indicators such as satisfaction of staff, patients, and referring physicians, and 4) have regular quality management board meetings including all professional groups of our heart center
Clinical risk management (CRM)^Citation101	German law demands hospitals to introduce and maintain CRM (§ 135 a SGB V)^Citation101	At our university medical center 1) we have a critical incident reporting system (CIRS), 2) report and analyze adverse events (AE) in mortality and morbidity conferences, 3) reflect all reported AE’s in a high-level expert commission in the sense of a peer review, 4) have an advanced praise and complaint management, and 5) proactively identify, analyze and manage risks for patient safety and quality
Martin Zeitz Center for Rare Diseases (MZCSE)^Citation36	The University Medical Center of Hamburg Eppendorf is an accredited A-center for Rare Diseases, where the Hamburg Marfan Center is a B-center. Nationaler Aktionsplan für Menschen mit Seltenen Erkrankungen [National plan of action for people with rare disease] (NAMSE)^Citation37 base their criteria on the following: 1) high-level expertise for the specific rare disease, 2) coordinator to navigate patients, 3) SOP to define patient pathways, 4) SOP to define diagnostic criteria, 5) availability of a multidisciplinary team as defined by guidelines, 6) identification of responsible physicians in each medical discipline including SOP for case conferences and documentation of regular team meetings, 7) concepts for psychosocial care, 8) concepts for transition, 9) SOP defining structured cooperation with patient organization, 10) SOP defining cooperation with other disease-specific B-centers including case conferences and quality circles, 11) SOP defining cooperation with other disease-specific C-centers, GP and non-medical service-providers, including case conferences and quality circles, SOP defining case-conferences for external patients, IT-based and tele-medical networks, 12) access to specialized diagnostic modalities, 13) SOP that describes how to participate in the development of medical information material, 14) obligation to contribute information to the mapping of the service landscape, 15) concepts for a structured medical education program, and 16) SOPs about participation in research projects, clinical studies, health care research and registers, IT-structure for data exchange, and criteria for research quality	Our MFS-B-center fulfills NAMSE-criteria 1–8, and 12. 6) Marfan-board meetings take place every 3 months; all other conferences take place by phone, or directly together with the patient, 9) We cooperate intensively with the Marfan organization, 10) with other B-centers, and 11) with GPs, although formal C-centers are not established, and 13) we provide a plethora of disease information material, but we do not have SOPs for these issues, 14) Our center enlists in the Orphanet database (http://www.orpha.net/national/DE-DE/index/startseite/) with annual up-date of information, 15) we do not have a structured educational program on MFS, but we provide training in our case conferences almost on a daily basis. Our center participates in national and international research and clinical programs, but there is no IT-based data exchange, 16) Our university center has spent thousands of Euros on an IT-based register infrastructure, but data protection regulations impose rigid barriers to its actual use.
Structures of University Heart Center (UHZ)
German Aorta Center Hamburg (DAZH)^Citation13	Case conferences including decision making and morbidity and mortality analysis^Citation103	We use our aorta center board meetings for multidisciplinary discussion of complex aortic pathologies and also for updating outcomes of decisions and procedures^Citation23
Generic structural elements
Structures for a multidisciplinary program according to the framework of Meguid et al^Citation104	Establish/obtain/maintain 1) a business model, 2) physician/administrative buy-in, 3) administrative and hospital support, 4) hire a multidisciplinary clinic coordinator, 5) scheduling logistics, 6) rotating schedule from all participating specialists, 7) support services, 8) patient flow templates, 9) current summary reports of diagnosis and treatment, 10) provide welcome folder with letter describing all appointments for that day, 11) mock days to minimize obstacles and delays, 12) flag patients to capture clinic volumes in the EMR, 13) marketing, 14) community outreach, and 15) data collection for research projects	1) German legal directives regulate the financing of MFS care,^Citation25 2 and 3) the hospital provides staffing, administration, infrastructure, 4) coordinating physicians are employees of the hospital with many additional professional obligations, 5) a coordinating nurse has a “Marfan-telephone” to organize individualized appointments in an electronic scheduling system, 6) interns can rotate voluntarily into our Marfan center and get trained by experienced colleagues, 7) nutrition councilors, social works, pharmacists, microbiologists are available as part of the hospital structure, 8) patient flow templates are constantly revised along changing routines and patient requests, 9) we keep clinical information on each patient current in our EMR, where every MFS-physician has access to summary records, original imaging recordings, laboratory findings and all other clinical information, 10) we use standard invitation letters that describe our schedules, 11) mocking is part of our culture of criticism and we have a formalized praise and complaint management system, 12) our university controlling department uses SAP-based IT-systems to monitor MFS-patient volumes and costs, 13) a flyer and a website presents our Marfan clinic, which provides contact information, scope of care, and educational content on MFS, 14) we communicate continuously with the referring physicians via dismissal letters, phone and email about specific patients, and we communicate constantly with local and national representatives of the German Marfan organization, 15) prospective data collection from clinical routines for research severely restricted by privacy and data protection laws
Structures for patient- centered care based upon the framework of Bergeson and Dean^Citation117	Bergeson and Dean identify four evidence-based design criteria to support patient-centered care:^Citation118 A) ensure access and continuity of care: 1) open access or advanced access patient scheduling, 2) continuity of care with a clinician, 3) multiple routes of practice access including access to non-physician members, contact methods can be by telephone, email, or drop-in visit, or patients access to EMRs. B) Provide opportunities for patients to participate in the care process: 1) designing office visits specifically to address patients’ concerns, eg, using tools like encouraging the use of patient lists of concerns, agenda cards, 2) involving families in the design of care, 3) (web-based) tools for self-assessment of health status, and 4) providing patients with information about the care they should be receiving. C) Provide self-management support: 1) collaborative goal setting and action planning, 2) action planning (web-based) tools, 3) clear and agreed-upon follow-up plans, 4) use of printed post-visit summary, 5) peer support by patient-to-patient mentorship, advocacy roles of individuals, and group education in self-management skills. D) Coordinating care between settings: 1) establish a specific care coordinator role within the primary care team, 2) providing standardized referral and hand-off information, 3) patient-held records	Our MFS center has adopted the following measures from the list of Bergeson and Dean: A) access and continuity of care: 1) we alleviate scheduling of appointments and access to our center by using a “Marfan-phone” for direct contact to our “Marfan-nurses”, 2) we provide continuity of care both with nurses and physicians, 3) we provide access to our nurses, we have our phone-numbers and email addresses publically assessable on the web, and we permit drop-in visits for brief counseling. B) Opportunities for patients to participate in the care process: 1) we schedule one hour for each initial patient interview, and we encourage patients to use lists of concerns and to 2) have their family members or other confidant with them in the interview, 3) we developed screening-devices for clinical MFS-self-assessment,^Citation111 4) we provide patients with written instructions about clinical management C) Provide self-management support: 1) we use shard-decision approaches for action-planning, 2) we do not use formalized tools, 3) we communicate clear follow-up plans, 4) including written summary reports, and 5) we encourage contact to the German Marfan Organization D) Coordinating care between settings: 1) our center coordinators and social workers help patients to navigate in the health care system, 2) we use letters of invitation to inform patients prior to visiting our center, and we 3) send our medical reports to the GP and to the patient, where we try to use generic rather than medical language

Abbreviations: EMR, electronic medical record; GP, general practitioners; MFS, Marfan syndrome; SOP, standard operating procedure.

Table 2 Multidisciplinary management of Marfan syndrome according to the aim and method of care in each discipline

Discipline	Aim of care	Method of care
Core disciplines
Pediatrician/pediatric cardiologist	To diagnose MFS and other GAS as early in life as possible To prevent cardiovascular, ophthalmic, or orthopedic complications To achieve full integration into school, physical education, and support early career choices To achieve a successful transition from adolescence to adulthood	Periodical evaluation of cardiovascular features (ECG, TTE), growth, skeletal features, ocular symptoms, pulmonary airway, integument, dural ectasia, and dental features Review diagnosis periodically in unclear cases Provide prophylactic medication including BAB, ARB, or ACEi and endocarditis prophylaxis Review physical activity restrictions/lifestyle modifications
Human geneticist	To inform patients and families about implications of GAS To confirm the clinical diagnosis by identifying the disease-causing mutation To molecularly differentiate MFS from other GAS	Complete family history and analysis of the pedigree Genetic counseling Arrange appropriate molecular genetic testing Interpret and counsel regarding the results
Cardiologist	To establish a correct diagnosis of MFS or of other GAS To predict, prevent, retard, or treat aortic aneurysm, mitral or aortic valve regurgitation or IE, or myocardial dysfunction To protect women from aortic complications when they plan pregnancy	Inform patients about life-style modifications including some restrictions in adults such as no contact sports, no isometric exertion, no exertion at maximal capacity Treat with BAB, ARB, or ACEi Perform baseline NT-pro-BNP serum levels, 12-lead resting ECG, 24-hour blood pressure measurements, TTE, MRI of entire aorta (in Germany, not in the US) Perform annual follow-up visits including NT-pro-BNP serum levels, 12-lead resting ECG, blood pressure measurements, TTE, and MRI of the aorta if indicated
Heart surgeon	To rescue life when aortic dissection or rupture occurs To normalize life-expectancy by performing prophylactic aortic root replacement for growing aneurysm or reconstructive surgery of other heart valves To protect women from aortic complications when they plan pregnancy To improve life quality by avoiding anticoagulation, artificial prosthetic noise, or unnecessary cosmetic impairment	Emergency replacement of the aortic root using composite- graft replacement with a mechanical valve or valve-sparing root replacement techniques (favor for David technique^Citation119) when aortic dissection or rupture occurs Prophylactic aortic root replacement using the reimplantation technique according to David^Citation118 Mitral valve repair surgery Participate in cardiologic post-surgical follow-up visits
Vascular surgeon/vascular interventionist	To rescue life when aortic dissection or rupture occurs (type B) To protect against rupture of the descending thoracic or abdominal aorta, or both To protect against organ malperfusion from aortic dissection or vascular embolism	Open surgery or endovascular treatment of aortic aneurysm (prophylactic), dissection (acute and chronic), or rupture of the thoracic or abdominal aorta Treatment of vascular complications of main aortic branches
Orthopedic surgeon	To enable and support professional and private living arrangements To convince parents of the importance of regular sporting activities To support and instruct orthopedic colleagues, who less frequently are confronted with MFS patients	Imaging of the spine Podiatrist care, “short foot exercise” Preparticipation evaluation (PPE) before athletic participation Conservative and operative treatment options to both children and adults with scoliosis or with protrusive hip arthritis
Ophthalmologist	To assess ophthalmic diagnostic criteria of MFS To provide a reliable statement on the ophthalmic prognosis and treatment options To implement and improve new ophthalmic screening techniques	Basic ophthalmological examinations: distance corrected visual acuity, intraocular pressure measurement, documentation of pupil centration (miosis), slit-lamp examination to determine iris stromal atrophy and dilated funduscopy of the retina and thorough lens position and zonular status determination New techniques: corneal topography, tomography, and dynamic in vivo curve analysis
Nurse	To provide whole-person-perspective-care comprising five dimensions, ie, physical, psychological, sociocultural, development based, and spiritual dimension	Strengthen the individual patient’s daily self-care activities Networking between specialized departments to provide individualized care Education to make patients experts of their own disease
Auxiliary disciplines
Forensic pathologist	To determine the cause of death in persons who died outside the clinical setting To identify possible treatment failures including misdiagnosis and malpractice To identify genetic causes of death such as GAS To initiate family member support	Autopsy of all persons who die of unclear cause outside a hospital setting Perform genetic testing in deceased persons with aortic disease and a risk for GAS Genetic counseling of family members of the deceased person
Radiologist	To assess diagnostic criteria of MFS To identify aortic and vascular complications of MFS or other GAS including aneurysms of cerebral-, carotid-, visceral, and peripheral arteries. To specify chronic aortic and vascular pathology as aneurysm, tortuosity, dissection To identify acute aortic syndromes (AAD, IMH, PAU) and vascular complication including the rupture and organ malperfusion	Tomographic imaging of the entire aorta (index and follow-up CT or MRI scans) Tomographic imaging of the dura as diagnostic criteria of MFS Cranial radiographs (craniofacial characteristics), Conventional chest radiography and CT (lung emphysema and pneumothorax)
Pulmonologist and sleep specialist	To identify emphysema, pneumothorax, and restrictive lung disease (from skeletal deformities) and to prevent or treat pulmonary complication To identify and treat individuals with sleep apnea to improve cardiovascular prognosis	Counseling on potential restriction in physical activities Pulmonary function testing Chest radiography or CT Polygraphy to screen for OSA/CSA CPAP therapy
Rhythmologist	To identify patients at risk for SCD, to stratify such risk, and to initiate preventive therapy, where indicated	Methods for risk stratification of SCD: TTE: myocardial dysfunction? Aortic regurgitation? Mitral valve prolapse? Mitral valve regurgitation? 12-lead resting ECG: PVCs? 24-hour-Holter ECG: PVCs >10/h, non-sustained and sustained VTs, abnormal heart rate turbulence (TS and TO abnormal) NT-proBNP serum levels: elevated (>200–600 pg/mL) Genetics: FBN1-mutations within exon 24–32?
Orthodontist/dentist	To identify dental and skeletal class II configurations, joint hypermobility To prevent temporomandibular joint dysfunction and condylar resorption To identify and prevent periodontal inflammation to reduce the risk of IE To prevent reduced chewing efficiency, lip incompetence and craniofacial dysmorphology	Bite correction and regulation of craniofacial growth in childhood and in adolescence Diagnosis of temporomandibular joint dysfunction If required prescribe physiotherapy Professional tooth cleaning at regular intervals to reduce periodontal inflammation Prescribe myofunctional therapy to achieve lip competence and to strengthen the orofacial muscle
Neurologist	To assess neurologic diagnostic criteria to establish the diagnosis of MFS To prevent or identify cardioembolic stroke, cervical and vertebral artery dissections, and intracranial aneurysms subarachnoid hemorrhage, especially in LDS To consider GAS in young individuals with stroke and cervical artery dissection	Neurological examination Regular neurovascular imaging in LDS Interpretation of accentuated vertebral and carotid artery tortuosity Neurosurgical and endovascular treatment of cerebral aneurysms Acute treatment and secondary prevention of stroke
Obstetric surgeon	To allow mothers and families to make an autonomous decision on family planning and pregnancy To prevent or to manage complications of pregnancy in mother and child successfully	Counseling for family planning and pregnancy in terms of risks of mother and child TTE prior to, during and until 3 months after pregnancy Obstetric board meetings during pregnancy Emergency planning in high-risk pregnancies
Psychologist	To reduce the burden of anxiety, trauma, feeling of stigmatization To improve coping with MFS by strengthening the patients’ self-confidence	Establish a solid, trust-based patient-therapist-alliance Identify body image disorders, family conflicts, accidental risk behavior, sex-specific aspects
Rehabilitation specialist	To achieve the best possible support of the patient’s capacities with respect to biological, psychological, and social aspects	Formulation of patient’s individual rehabilitation goals to make rehabilitation plan Provide specialized education Daily bicycle ergometry, gymnastics, fitness training, and nordic walking units to overcome patients’ uncertainty regarding their physical abilities Psychological counseling Relaxation training Counseling for job-related issues and dietary counseling

Abbreviations: AAD, acute aortic dissection; ACEi, angiotensin converting enzyme inhibitor; ARB, angiotensin-receptor blockers, BAB, beta-adrenergic blockers; CPAP, continuous positive airway pressure; CSA, central sleep apnea; CT, computed tomography; ECG, electrocardiography; GAS, genetic aortic syndromes; IE, infective endocarditis; IMH, intramural hematoma; LDS, Loeys-Dietz syndrome; MFS, Marfan syndrome; MRI, magnetic resonance imaging, NT-pro-BNP, N-terminal probrain natriuretic peptide; OSA, obstructive sleep apnea; PAU, penetrating therosclerotic ulcer; PVCs, premature ventricular contractions; SCD, sudden cardiac death; TTE, transthoracic echocardiography.

Figure 2 The structure of the Hamburg Marfan center.

Abbreviations: Card, cardiology; Forens pathol, forensic pathology; Genet, genetics; Heart surg, heart surgery; Neurolo, neurology; Opthal, opthalmology; Ortho, orthodontology; Ortho surg, orthontic surgery; Psych, psychology; Pulmo, pulmonology; Radiol, radiology; Rehabil, rehabilitation; Vasc interv, vascular intervention; Vasc surg, vascular surgery.

Figure 3 The magnet metaphor of team member, structure, and meaning. (A) In the absence of instructive structures team members scatter like iron shavings in a loose pile. (B) Structures align team members by power of meaning like a magnet aligns iron shavings by the power of its magnet field.

Table 3 The strategic fitness matrix of multidisciplinary health care teams for maximizing therapeutic success

	Three dimensions of therapeutic success
Team capacities that contribute to maximizing therapeutic success:	(1) Efficiency by achieving biological goals, such as diagnose, prevent, cure, rehabilitate, or palliate disease (“Do therapy right”)	(2) Effectiveness by achieving social goals such as satisfying guidelines, values, or ethical demands (“Do right therapy”)	(3) Motivation by achieving psychological goals such as emotional support, or patients’ identification with therapy (“Do therapy that feels right”)
Team member	Team of professionals who share a common purpose and who understand their own and the others’ role, function, and responsibility	Team of professionals with high communicative, social, legal, and ethical competence, and respect for other team members, and democratic style of decision making	Team of professionals who have a strong own motivation, have team spirit, confidence, trust, to motivate the entire team
Structure	Organizational structures that provide team with resources, equipment, physical environment to reduce risks and errors, and to support the team’s medical performance	Organizational structures that support trustful team relationships, that teach, train, and support communicative, legal and ethical standards for all team members	Organizational structures such as human resource management and leadership that support intrinsic motivation of team members in the team
Meaning	A shared enthusiasm for medical excellence through team effort	A shared focus on patients and on ethical values	A team with high motivation that enkindles their patients

Table 4 Statements of meaning

Patient representative	For patients and their families multidisciplinary care means a way out of fear and uncertainty, a way toward a normalized life expectancy and the highest possible quality of life. This is what Marfan Hilfe is fighting for. Marina Vogler, Marfan Hilfe Deutschland
Patient coordinator	Multidisciplinary teams are crucial for providing excellent care to patients with complex disorders. Apart from the reward that each team member receives through improved patient well-being, being part of such a team is extremely rewarding to the team members themselves by means of emotional, medical, and personal support they receive by participating in these teams. Christina Weiler-Normann, patient coordinator of the Martin Zeitz center for rare diseases
Pediatric cardiologist	Just one sentence from the pediatric Marfan view: The patient is the family. Thomas S Mir, coordinator of the pediatric Marfan clinic
Human geneticist	I want to provide optimal whole-person care for our patients with Marfan syndrome in a multidisciplinary team of experts that allows us all to learn from each other to continuously optimize the quality of our high-standard care. And I want to have fun doing my work as a professional. Kerstin Kutsche, human geneticist
Heart surgeon	The key challenge is to identify the individualized best therapeutic strategy for patients with Marfan syndrome, who present with complex medical problems resulting from multiorgan disease. Getting to the best achievable quality, and maximizing therapeutic success gets me the highest possible satisfaction as a medical professional. Alexander M Bernhardt, heart surgeon
Vascular surgeon	Multidisciplinary teams serve as gear wheals within a dedicated framework of diverse functions, knowledge, and skills. Hereditary soft tissue disorders specifically need a distinct multifaceted approach due to their manifold nature. Only intransigent dedication and highest level of expertise in every aspect of these demanding diseases will achieve a contented and healthy individual patient, which should be the primary goal of any multidisciplinary approach. E Sebastian Debus, director of the Clinic of Vascular Medicine
Vascular interventionist	Multidisciplinarity in treatment of aortic diseases is a key-factor to clinical success. This approach requires excellent communication skills and may be time-consuming. Besides the advantage of combining the best knowledge of many specialists, it allows us to grow by gaining insight into each other’s background, way of thinking, and clinical decision making. Tilo Kölbel, coordinator of the Aorta Center
Orthopedic surgeon	The main benefit in working in a multidisciplinary team for the care of patients with MFS is the combination of being able to use the physicians’ expertise in a subspecialty with the possibility to rely on and learn from the detailed knowledge of other team members and thereby improve patient care. Malte Schroeder, orthopedic surgeon
Ophthalmology	As ophthalmologist I want to contribute to the following five important goals: 1. Early diagnosis of Marfan syndrome to avoid multiple unnecessary examinations, 2. to maximize the individual therapeutic success, 3. to avoid blindness due to early examination especially in children but also in adults, 4. to reduce the psychiological stress reaction for the patient and his family, and 5. to keep in close contact to specialized colleagues to enable new therapeutic strategies. Bettina Fuisting, Clinic of Ophthalmology
Nursing	The comprehensive cross-linked treatment of our patients according to best quality standards and individual sight on our patients. Working on a same eye-level of the entire therapeutic team. Putting our clinic’s mission statement into use: Our success is the patients’ satisfaction Barbara Napp, chief of Nursing
Forensic pathologist	In the context of legal medicine it is essential to learn from the dead, ie, to serve the living, especially family members. Moreover, diagnostic errors and wrong tracks can be avoided by quality assurance concerning the cause of death. Klaus Püschel, director of the Institute of Forensic Medicine and Anna L Kammal, forensic pathologist
Rhythmologist	My dedication as rhythmologist is to bring results of electrophysiological tests in a knowledgeable and experienced multidisciplinary care team and to identify patients with Marfan syndrome who are at risk for sudden cardiac death. Prevention of this fatal outcome is the significant driver of my work. Boris A Hoffmann, rhythmologist
Sleep specialist	Sleep-related breathing disorders can result from different conditions (eg, heart failure, craniofacial abnormalities) and at the same time have influence on others (eg, hypertension, aortic dilatation). So to get the optimal results for the individual patient, it is highly beneficial to work multidisciplinary. Nele Gessler, cardiologist and sleep specialist
Orthodontist	A close multidisciplinary cooperation improves the early and efficient orthodontic and orthopedic treatment among patients with Marfan syndrome suffering from various craniofacial and oral abnormalities. Eva Vahle-Hinz, orthodontist
Neurologist	Neurologists rather rarely see patients with Marfan syndrome but if so, they usually present with severe conditions and challenging treatment decisions. Discussing these cases in a team of experts helps to better understand the patients’ specific problems and make the right treatment decisions. Götz Thomalla, neurologist
Strategic business development	The best medical treatment of the patient comes first. To facilitate local multidisciplinary team work, and national and international cooperation it requires more administrative support. For the future I hope that the complex treatment of patients with rare diseases will receive improved refunding. Gunda Ohm, chief of Strategic Business Development
Rehabilitation specialist	There is empirical evidence that multidisciplinary rehabilitation team care effectively improves rehabilitation outcome for different health problems. And we have the personal experience that it is very helpful for individuals with Marfan syndrome. Dieter Benninghoven, rehabilitation specialist

von KodolitschYBernhardtAMKölbelTDetterCReichenspurnerHDebusESMaximizing therapeutic success: the key concepts of individualized medical strategy (IMS)Cogent Med2015211109742

 Google Scholar

von KodolitschYBernhardtAMRobinsonPNAnalysis of strengths, weaknesses, opportunities, and threats as a tool for translating evidence into individualized medical strategies (I-SWOT)Aorta (Stamford)2015339810727069939

 PubMedGoogle Scholar

SachwehAvon KodolitschYKölbelTI-SWOT als Instrument zur individuell optimierten Therapie bei thorakoabdominalem Aortenaneurysma [I-SWOT as an instrument to individually optimize therapy of thoracoabdominal aortic aneurysm: effective, norm-compliant, and meeting the needs]GefäßchirugIn press2016 German

 Google Scholar

CremaMVerbanoCFuture developments in health care performance managementJ Multidiscip Healthc2013641542124255600

 PubMedGoogle Scholar

HoyleDISO 9000 Quality Systems Handbook: Using the Standards as a Framework for Business ImprovementButterworth-Heinemann2009

 Google Scholar

NAMSENationaler Aktionsplan für Menschen mit Seltenen Erkrankungen. Handlungsfelder, Empfehlungen und Maßnahmenvorschläge [National action plan for people with rare diseases. Fields of action, recommendations and suggestions of measures]2013 German.

 Google Scholar

GreutmannMPieperPGPregnancy in women with congenital heart diseaseEur Heart J201536372491249926112887

 PubMed Web of Science ®Google Scholar

MeguidCRyanCEEdilBHEstablishing a framework for building multidisciplinary programsJ Multidiscip Healthc2015851952626664132

 PubMed Web of Science ®Google Scholar

GrittiAPisanoSCatoneGIulianoRSalvatiTGrittiPPsychiatric and neuropsychological issues in Marfan syndrome: a critical review of the literatureInt J Psychiatry Med201550434736026526396

 PubMed Web of Science ®Google Scholar

ManowMLPaulsenNRybczynskiMAnalyse der Erlössituation bei der ambulanten Behandlung nach § 116 b SGB V am Beispiel des Marfan-Syndroms [Analysis of costs and profits of ambulatory care of marfan patients after initiation of a novel German legal directive (section sign 116 b SGB V)]Med Klin (Munich)20101058529537 German20824410

 PubMedGoogle Scholar

BergesonSCDeanJDA systems approach to patient-centered careJAMA2006296232848285117179462

 PubMed Web of Science ®Google Scholar

SheikhzadehSKuschMLRybczynskiMA simple clinical model to estimate the probability of Marfan syndromeQJM2012105652753522301820

 PubMed Web of Science ®Google Scholar

MintzbergHMintzberg on Management: Inside our Strange World of OrganizationsNew YorkFree PressLondonCollier Macmillan1989

 Google Scholar

DavidTEFeindelCMAn aortic valve-sparing operation for patients with aortic incompetence and aneurysm of the ascending aortaJ Thorac Cardiovasc Surg199210346176211532219

 PubMed Web of Science ®Google Scholar