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Transition programs at Connecticut Children's Medical Center
enable adolescents with chronic disease and disability to
successfully transition to adult care providers. Our focus
is on educating patients on the long-term consequences of
their disease.Complex Endocrine Disorders and Diabetes
For questions, call 860.545.9370
"Teens in Transit" is a transition program for patients with
complex endocrine disorders and diabetes.
Four adult endocrinologists and one reproductive
endocrinologist have signed on to see these transition
patients collaboratively with the pediatric
endocrinologists. During the period of co-management, brief
for diabetic patients and longer for complex endocrine
patients and transitioning GH-deficient patients, the
"transition passport" can be developed as a team and the
adolescent can begin to relate to the adult specialist. The
"transition passport" lists all current diagnoses,
therapies, associated disease complications/adult
morbidities for which continued surveillance is required,
and summarizes all baseline clinical and psychosocial
evaluations. It also develops an adult care roadmap that
provides guidelines for frequency of medical visits to
specialists and primary care providers, the role of each
adult provider in the overall care plan, and the frequency
of lab studies and other clinical evaluations.
Cardiac Care
For questions, call 860.545.9400 or email
fheller@ccmckids.org
Advances in surgery, medication and cardiac treatment enable
many patients with congenital heart problems to survive into
adulthood. The transition of these young people from
pediatric cardiologists to adult cardiologists requires
additional training and ongoing collaborative care to
improve health outcomes for these patients. There are
significant knowledge gaps in what is essentially a new area
of medicine. Funding for this program is being provided by
Calhoun Snack Foods.
Cystic Fibrosis
For questions, call 860.545.9440 or email
gdrapea@ccmckids.org
As the survival rate of people with cystic fibrosis
continues to improve, there are increasing numbers of adults
with CF. As people with CF age, they often present with 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
have different non-medical issues such as education and
career planning, health insurance, relationship issues,
disability, and end of life and transplant issues. It is
appropriate that care of adult individuals (with or without
CF) should be delivered by a physician trained in adult
care. Developing an Adult CF program that cares for and
assists adults with CF is a priority for the CF Foundation
as well as this CF Care Center. An
Adult Transition Protocol has been developed to facilitate this process.
Hemoglobin Disorders Treatment Center
For questions, call 860.545.9630
The steps to transition young adults with sickle cell
disease to adult care providers:
- 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 for transition are
agreed upon, including the timing.
- 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 CCMC 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.
Bleeding and Prothrombotic Disorders
For questions, call 860.545.9630
The comprehensive hemostasis program at CCMC cares for
children and adolescents with bleeding disorders, such as
hemophilia and von Willebrand disease, and prothrombotic
disorders such as factor V Leiden. The program manages
patients with thromboembolic disease (stroke, blood clots in
the lung or leg, etc.). The program is affiliated with the
University of Connecticut Comprehensive Hemophilia Treatment
Center. The nurse coordinator and social worker for the
Center work with patients both here at CCMC and at the UCONN
Health Center. Thus, the transition to adult care is smooth
and nearly seamless because of the coordination and
continuity made possible by the nurse and social worker
participating in the care of both children and adults with
these disorders.
Spina Bifida
For questions, call 860.545.9230
The Center for Children with Special Health Care Needs will
assist any family/child with transition to adult providers.
We work with the family and their community to set up a
local support network that meet the needs of the individual
young person. We also link with various, appropriate State
agencies that assist a person with special health care needs
succeed as adults.
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