Why build and aortopathy clinic for pediatric and adult multidisciplinary care? MAD Symposium June 24, 2017
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1 Why build and aortopathy clinic for pediatric and adult multidisciplinary care? MAD Symposium June 24, 2017
2 Recommendation and Vision Recommendation: The clinic should diagnose and manage Marfan syndrome and related conditions across age ranges, from prenatal through adult. The transition from medical management in childhood to adulthood is especially important and a clear plan must be in place for all patients (National Marfan Foundation). Vison: Provide patient and family-centered multidisciplinary care across the lifespan for patients with genetically triggered aortopathies, including Marfan syndrome, and their at-risk family members.
3 PubMed Search Pediatric and Adult Subspecialty clinic - 0 Family subspecialty clinic - 0 Transition of care pediatric to adult 1668 Models of comprehensive Multidisciplinary Care of Individuals in the United States with Genetic Disorders (Grosse, PEDIATRICS,2009) Chronic care model in primary care Disease specific comprehensive clinic
4 Physician perspective Marfan syndrome Loeys-Dietz Familial thoracic AA (FTAA) Bicuspid aortic valve with ascending AA FBN1/TGFβ, others Adapted from HC Dietz, 2014 MYH11, ACTA2 MYLCK, Others NOTCH1, TIMP3 Others
5 Family perspective: 32 father with history of aortic dissection at age 34. Family has one child. optho ortho pulmonary Child- Father Pediatrician ECHO Cardiologist Echo Adult CHD Internist optho Pediatric Cardiology Genetics Genetics pulmonary optho Genetic testing Depends on father s testing
6 Father with history of aortic dissection at age 35 Child- Father Pediatrician Outside Cardiologist Prescreening PMD Genetics Pediatric cardiology Imaging Adult cardiology Genetic testing with father (index case) Additional imaging where appropriate Adult and pediatric cardiology consultation Research protocols offered if eligible Ophthalmology, Pulmonology, Surgery, Ortho etc
7 Future State Clinic Sessions Rooms Morning Afternoon Session 8 hours AM: 11 patients PM: 11 patients A 8 appts, 4 pts Peds Combined Cards + Genetics, GC 3 New Ped Combo 90 mins 1 Rtn Ped Combo 60 mins Peds Cards 1 New Peds Cards 60 mins 6 Rtn Peds Cards 30 mins 7 appts, 7 pts B Peds Combined Cards + Genetics, GC New Ped Combo 90 mins Rtn Ped Combo 60 mins Adult Combined Cards + Genetics, GC New Adult Combo 90 mins Rtn Adult Combo 60 mins C 7 appts, 7 pts Adult Cards 1 New Adult Cards 60 mins 6 Rtn Adult Cards 30 mins Adult Combined Cards + Genetics, GC 3 New Adult Combo 90 mins 1 Rtn Adult Combo 60 mins (end of PM session) 8 appts, 4 pts D Social Work, Genetic Counselor, Research Coord, Surgeon Consult, etc. Genetic Counselor, Research Coordinator
8 Workflow Genetics Adult Cardiology Pediatric Cardiology Follow up Clinic Coordinators (Nurse/Genetic Counsellor) Reviews Referral PAS scheduling Follow up Aortopathy Clinic Medical genetics Genetic counseling Cardiology Imaging Clinical Research Protocols Additional appointments same day or next day Ortho Optho Pulm CT surgery/vascular
9 Goals of a family centered approach Identification of at risk family members Targeted genetic testing Improved patient education Improved coordination of care between subspecialties. Transition built into the program Improved compliance and surveillance Decreased morbidity and mortality
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