Parents can find themselves in an uncomfortable position when their child who has had a chronic disease reaches late adolescence and young adulthood, or when their child may be diagnosed with an "adult" disease.

The doctor that has served their child for so long may no longer feel comfortable managing these medical conditions. At the same time, the child may not readily be accepted into the adult medical world because his or her chronic disease is less common in adults. That's where transitional health care providers can be helpful.

Jane Trinh, MD, of Duke Med/Peds Primary Care describes transitional health care and answers common questions about it.

-- Dennis Clements MD, PhD, MPH

Jane V. Trinh, MD

What do you mean my child is too old for the pediatrician?

More parents are learning that their children have “aged out” of the pediatric health care system. Their adolescent or young adult has developed “adult” problems and is “too old” to be followed by their pediatrician. However, for years they have seen the pediatric subspecialists for the management of the specific chronic disease.

The transition to finding health care that is adult-oriented, but also knowledgeable about childhood illnesses, has become a challenge for many families. 

What is transition health care?

Transition health care is the purposeful movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care.

One goal of Healthy People 2010 is to provide uninterrupted services to young adults with chronic conditions as they transition from pediatric to adult health care. Healthy People 2010 is a set of health objectives designed to identify the most significant preventable threats to health and to establish national goals to reduce these threats, and is managed by the U.S. Department of Health and Human Services. 

Why is there a need for transition health care now? Does it affect that many children?

Almost 20 percent of children have a chronic physical, emotional, behavioral, or developmental condition. Examples include asthma, diabetes, congenital heart disease, cystic fibrosis, spina bifida, cerebral palsy, and more.

Nearly half a million children with special care needs become adults every year.
Amazingly, over the past three decades, the life expectancy of children with chronic illnesses has increased dramatically, with over 90 percent of such children surviving beyond their 20th birthday. For example, less than one-third of patients with spina bifida survived beyond age 20 in the 1970s and more than 80 percent do now. 

Why can’t they continue to see the pediatric subspecialist?

All adults with special health care needs deserve an adult-focused primary care physician. This is to ensure that just as children receive optimal primary care in a medical practice experienced in the care of children, adults too benefit from receiving care from physicians who are trained and experienced in adult medicine. The most successful transition requires communication and collaboration among primary care specialists, subspecialists, young adult patients, and their families.

Why can’t they just start seeing an adult subspecialist?

Adolescents and young adults with chronic conditions share many of the same health issues and concerns as their peers without chronic conditions.

Thus, transition health care providers should be prepared to address common concerns of young people, including growth and development, sexuality, mood and other mental health disorders, substance use, and other health promoting and damaging behaviors.

Adults, including those with childhood-acquired chronic conditions, should receive adult-oriented primary health care from appropriately trained and certified providers, in adult health care settings. The primary care provider, in partnership with the patient and family, will also take responsibility for coordinating primary health care, specialty health care, and ancillary health services.

When should a family start to transition a child’s medical care?

Transitioning is a process -- not an event -- and should start early, often in the preteen years. A well-timed transition from child-oriented to adult-oriented health care allows young people to optimize their ability to assume adult roles and functioning.

For many young people with special health care needs, this will mean a transfer from a child to an adult health care professional; for others, it will involve an ongoing relationship with the same provider but with a reorientation of clinical interactions to mirror the young person’s increasing maturity and emerging adulthood.

What can you do to start the transition process for your child?

• Assess your teen’s knowledge of their disability -- fill in gaps of understanding.
• Teach your teen to call the doctor if they experience a danger sign and to tell you about any danger sign.
• Teach your teen to take their medication and tell you how much is taken.
• Discuss the long-term course of the disability with your teen and what they might expect in the future.
• Teach your teen to go to doctor visits without you. Encourage your teen to communicate directly with the doctor.
• Teach your teen to take his temperature and manage specific self-care.
• Help your teen find adult health care providers.
• Discuss how to pay for health care -- and help your young adult find insurance.

(Adapted from Washington State Adolescent HealthTransition Project presentation for young adults and parents, accessed 3/1/2009)

Who provides transitional care medicine at Duke?

We have combined internal medicine and pediatrics (Med/Peds) trained physicians at Duke who are certified to provide adult-oriented primary health care to adults with childhood-acquired chronic conditions in adult health care settings.

Get more information about our adolescent health care services.

-- Jane Trinh, MD, is a physician with Duke Med/Peds Primary Care.

-- Dennis Clements, MD, PhD, MPH, is the chief of primary care pediatrics at Duke Children's Hospital.