300 Longwood Avenue Boston, MA 02115 (617) 355-6000 Clinical Services (Adult Congenital Heart Service): Transition Clinic Studies have unequivocally shown that patients who have suffered with chronic childhood illness, once reaching adulthood, benefit from transitioning into an adult program, one designed to meet their evolving adult needs. There is a substantial body of literature addressing this transition process in congenital heart disease, as well as in other chronic childhood illnesses. For the adult with congenital heart disease, the needs of this patient population and recommendations for transition were formalized at the 32nd Bethesda conference convened by the ACC (JACC, 2001) and by the British Cardiac Society (Heart, 2002) (LINKS). Adult programs, in general, and the BACH service in particular, differ from the pediatric model in the following ways: Focus on physical aging: The adult is physically aging rather than physically growing and developing. In addition, the adult with chronic illness often has physically aged at an accelerated rate leading to early development of multiple adult-type co-morbidities. Address adult-type co-morbidities: These co-morbidities are often different than pediatric chronic issues, i.e. the management of diabetes, renal disease, systemic hypertension, liver disease, psychiatric illness, and even heart failure and arrhythmias are different in the adult vs. pediatric patient. Change in visit dynamics: The dynamics of the visit evolves from a paternalistic relationship (doctor, parent, patient triangle) to a horizontal adult relationship. This, of course, should not preclude the inclusion of family members; rather it should just remain patient focused. Focus on problem-solving strategies: As young people develop, they move from using emotional coping strategies to problem-solving strategies. Chronic illness often interferes with this development and has been associated with depression and anxiety. An adult clinic can focus on, and recognize the importance of developing these strategies. Focus on patient education: Promote the patients understanding of the major cardiovascular issues: Basic anatomy and physiology of their congenital heart disease and surgical repair/palliation Potential problems they may face in the future with an emphasis on the importance of follow-up, adherence to medical care, and prevention Important signs and symptoms for which to watch and about which to worry Reason for the medications prescribed AND the potential side effects Promote the patients understanding of the major generic health issues: Sexual health Substance abuse Exercise and nutrition Exercise and nutrition Self-advocacy issues Vocational issues Adherence to medical care Peer support Insurability "Transition to BACH" Clinic We have recently designed and developed a "Transition to BACH" Clinic, scheduled to begin in January of 2006. The goals of the proposed transition clinic are: to provide uninterrupted health care that is patient centered, age and developmentally appropriate, flexible, and comprehensive, to educate the patient about his/her disease, to promote skills in communication, decision-making, self-care, and self-advocacy, to promote personal and medical independence, to promote sense of control over one's health, health care decisions, and psychosocial environment, and to maximize quality of life and future potential. The transition process will include: you, the patient, your parents, family, and close friends, the adult congenital heart team (staff cardiologist, physician assistant/nurse practitioner), your primary care provider and primary pediatric cardiologist (we understand how important they have been and will continue to be in your care), a multi-disciplinary health care team including a key medical consult list of adult caregivers that have a special interest and sensitivity to the young adult with chronic medical illness (i.e. gynecology and obstetrics, hepatology and gastroenterology, pulmonology, endocrinology), and a consult list of other non-medical professional services (i.e. educational, vocational, and social services). Creation of the BACH Transition Clinic was spearheaded by one of our previous Adult Congenital Heart staff physicians, Alison Knauth, and one of our mid-level practitioners, Sue Fernandes. Other patient resources will include: Peer support groups Monthly seminars for patients including the following topics: Nutrition Pregnancy and congenital heart disease New technologies/interventions New medications Insurance Educational/vocational opportunities The information on this website should not be taken as medical advice, which can only be given to you by your personal health care professional. Copyright © Children's Hospital Boston. All rights reserved.