Transitioning patients with pediatric disease to adulthood

[Guest guest]

Transitioning patients with pediatric disease to adulthood

As life expectancy increases, needs change

http://www.eurekalert.org/pub_releases/2008-04/iu-tpw042808.php

INDIANAPOLIS – Growing pains can mean one thing for a typical

adolescent and quite another to an older teen with cerebral palsy

attempting independence in an adult world. A unique program, the

Indiana University School of Medicine Center for Youth and Adults

with Conditions of Childhood (CYACC) is helping these youths spread

their wings and live more independently.

IU pediatricians at Riley Hospital for Children have been at the

forefront of innovative care for patients, including advances that

over the past three decades have created new challenges for patients

with special needs and their caregivers. Now, Riley physicians are

leading the way to providing a solution.

CYACC provides interdisciplinary consultation in a health-care

setting to specifically address transition and adult life issues

regardless of the youth or adult's diagnosis.

" Twenty to 30 years ago it was not unusual for children with serious

congenital or developmental conditions to die before reaching adult

life, " said Ciccarelli, M.D., an assistant professor of clinical

medicine and pediatrics at the IU School of Medicine and medical

director of CYACC. " Today, the life expectancy of many of these

children reaches well into adulthood yet there are few programs

available to help them transition to independent lives with both the

best health status and the fullest participation in their

communities. "

Nationally, there are only a handful of programs that are beginning

to address the need, Dr. Ciccarelli said. It is estimated that 4,000

Indiana youth with special health-care needs experience transition

into adult life each year.

CYACC patients, who are between the ages of 11 and 22 years, are seen

at the Wishard Primary Care Center on the IU Medical Center campus.

Frequent diagnoses of patients served by the CYACC team are cerebral

palsy, Down syndrome, autism, diabetes, rheumatologic disorders and

spina bifida. Resources in many specialties and disciplines are

involved to successfully integrating youth with chronic conditions

into the adult world.

Psychosocial, educational, vocational and medical needs of the

adolescents are addressed by the interdisciplinary team of

physicians, nurses, social workers and community organization

liaisons. Health-care coverage options and applications are made

available. Family support and education are provided. While

increasing numbers of community programs provide resources or

accommodations for those with disabilities, many families are not

aware of these opportunities in their communities. Collaboration is

tailored for each individual with schools, employers, and agencies

that can provide services for youth and their families.

Coordination of medical care also is one of the key issues the team

addresses. With more than 300 unusual chronic conditions with onset

in childhood, adult practitioners often have never provided care for

individuals with the majority of these conditions. Pediatric doctors

are trained to care for youth with childhood diseases but are not

routinely familiar with addressing issues such as reproduction and

other health issues common in adult life.

The team approach provides hands-on learning opportunities for IU

School of Medicine physician residents in training. By involving the

young physicians, CYACC extends its mission; these residents will

take with them an awareness of the comprehensive medical, social and

educational needs of this group of patients as they begin their

careers in Indiana or elsewhere.