Transition Programs Transition programs at Connecticut Children’s Medical Center enable adolescents with chronic disease and disabilities to successfully transition to adult care providers. Programs focus on educating patients on the long-term effects of their disease. Complex Endocrine Disorders and Diabetes “Teens in Transit” is a transition program for patients with complex endocrine disorders and diabetes. Endocrinologists and reproductive endocrinologists see transition patients collaboratively with the pediatric endocrinologists. During a period of co-management, the team develops a transition passport, which summarizes all baseline clinical and psychosocial evaluations and lists all current diagnoses, therapies and associated disease complications for which continued surveillance is required. The passport also develops an adult care roadmap that provides guidelines for frequency of medical visits to specialists and primary care providers, the role each adult provider has in the overall care plan, and the frequency of lab studies and other clinical evaluations. For more information, call 860.545.9370. Cardiac Care Advances in surgery, medication and cardiac treatment enable many patients with congenital heart problems to survive into adulthood. As there are significant knowledge gaps in what is essentially a new area of medicine, the transition from pediatric cardiologists to adult cardiologists requires ongoing collaborative care to improve health outcomes for patients. Funding for this program is provided by Calhoun Snack Foods. For more information, call 860.545.9400. Cystic Fibrosis As people with cystic fibrosis (CF) age, they often experience more adult-specific health issues, such as CF-related diabetes, osteoporosis, fertility and reproductive issues, and cardiac-related problems such as hypertension. Adults with CF also face different non-medical issues, such as education and career planning, health insurance, relationship issues, disability, and end of life and transplant issues. Developing an Adult CF program that cares for and assists adults with CF is a priority for the CF Foundation as well as the CF care center at Connecticut Children’s. An Adult Transition Protocol has been developed to facilitate this process: Adult Transition Protocol Age 13-15 years: Patients to be seen by pediatric care providers without parents in room. After evaluation, the family returns to the room for discussion of assessment and management issues. Age 16: Patients to be scheduled into pediatric CF clinic on adult CF clinic days. Adult care providers (MD’s and Hartford Hospital inpatient CF coordinator) stop in and meet patients/families in order to introduce themselves to patients. Age 17: Patients alternate visits between the pediatric and adult care providers in the CF clinic. This allows them to become familiar with their new providers before the transition is completed. They are seen by the pediatric providers for one visit and their next visit is with an adult care provider. Age 18 and older: Patients to be seen in CF clinic by adult care providers, and if they require hospitalization, will be admitted to Hartford Hospital. Patients may also be seen in the adult care providers’ office for acute or post hospitalization visits. The CF Center nurse coordinator, CF Center nutritionist, and CF Center physical therapist will continue to follow the adult patients in clinic and during Hartford Hospital admissions. The CF Social Worker will play an active role in addressing transition issues with adolescents and young adults, but cannot follow the patients after they have completed the transition to the Adult CF program. The Hartford Hospital based stress management psychologist and team, as well as a psychiatrist and hospital based chaplain, will follow the CF adults on both an in-patient and out-patient basis to provide social/emotional/spiritual support. For more information, call 860.545.9440. Hemoglobin Disorders Young adults with sickle cell disease are transitioned to adult care providers in the following steps. As a person with sickle cell disease approaches 18 years of age, the topic of transition is discussed to determine the patient’s perceptions and wishes regarding transitioning to adult medicine specialists. The Hemoglobin Disorders Treatment Center staff holds a patient care review conference to refine the patient’s problem list and determine if any specific medical evaluations or testing is required prior to transitioning the patient. Taking into consideration the patient’s medical problems and needs and the emotional and social “readiness” of the patient, goals and timing for transition are agreed upon. The patient’s primary care physician is invited to participate in the planning process for transition. Appropriate adult primary care and hematology providers are chosen by the patient with direction as needed from the staff and the PCP. Permission to release medical information to these providers is obtained and the providers are contacted. A formal summary of the patient’s medical problems and current ongoing management is created and a copy given to both adult care providers and the patient. The patient has initial appointments with the providers and then has follow-up by phone or in person with the Treatment Center staff. The Connecticut Children’s Hemoglobin Disorders Treatment Center staff make themselves available to the patient and the new providers for consultation until the patient is well established in the adult heath care setting. For more information, call 860.545.9630. Bleeding and Prothrombotic Disorders The comprehensive hemostasis program at Connecticut Children’s Medical Center cares for children and adolescents with bleeding disorders such as hemophilia and von Willebrand disease, and prothrombotic disorders such as factor V Leiden. Affiliated with the University of Connecticut Comprehensive Hemophilia Treatment Center, the program manages patients with thromboembolic disease (stroke, blood clots). The nurse coordinator and social worker work with patients at both Connecticut Children’s and at the University of Connecticut Health Center to coordinate a smooth transition to adult care. For more information, call 860.545.9630. Spina Bifida The Special Kids Support Center assists children and families with the transition to adult providers for ongoing spina bifida care. We work with the family and their community to set up a local support network that meets the needs of the individual patient. We also link with appropriate state agencies that assist people with special health care needs succeed as adults. For more information, call 860.837.6200.