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)101	Our university medical center has a quality management system certified according to DIN ISO 9001,116 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)101	German law demands hospitals to introduce and maintain CRM (§ 135 a SGB V)101	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)36	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)37 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)13	Case conferences including decision making and morbidity and mortality analysis103	We use our aorta center board meetings for multidisciplinary discussion of complex aortic pathologies and also for updating outcomes of decisions and procedures23
Generic structural elements
Structures for a multidisciplinary program according to the framework of Meguid et al104	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,25 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 Dean117	Bergeson and Dean identify four evidence-based design criteria to support patient-centered care:118 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,111 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.