Transitioning Health Care With No Place to Go

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Commentary - March 2009


Tex Med . 2009;105(3):57-58.

By Cynthia Peacock, MD

A 19-year-old female with learning disabilities and cerebral palsy is told by the special health care needs pediatric subspecialist at a children's hospital that she needs to continue her health care in an adult health care setting; she has aged out of the pediatric health care system. The pediatric subspecialist advises that her pediatrician will need to help her and her family find adult health care providers.

She had not seen her pediatrician in a couple of years, so when her mother calls to make an appointment, she was informed she couldn't schedule the visit because her daughter is too old. The pediatrician's office gives the mother recommendations for some adult health care physicians in her area of town, but when she calls to schedule an appointment, she finds that none of the physicians accepts Medicaid patients.

After an exhaustive search of the telephone book, the patient's mother finds a physician who accepts Medicaid. But when the time comes for the visit, the physician tells the mother that her daughter's care is too labor intensive, and he isn't prepared to care for someone with cerebral palsy who is in a wheelchair. He informs the mother that he isn't familiar with the paperwork requirements for getting certain needed medical equipment, nor does he know any orthopedic surgeons or adult physical medicine and rehabilitative doctors who would take their Medicaid.

While searching for a physician, the patient's wheelchair breaks. The family can't get it fixed because they need a physician's signature on the order, so the patient starts to miss school. The patient becomes depressed due to her inability to go to school every day and stops eating. To add to the mother's anguish, she learns that her daughter will lose some of her Medicaid benefits, specifically nursing care services, when she turns 21 and is switched to the adult Medicaid system. The patient becomes dehydrated and develops pneumonia; she ends up back at the emergency room of the children's hospital. The emergency room doctors question the mother as to why the patient hasn't been receiving health care.

Every year in the United States, half a million adolescents and young adults with childhood illnesses or disabilities transfer to an adult health care system that is not prepared for them. The lack of adult health care professionals interested in these patients is a large obstacle and creates a big gap in today's health care system. There seems to be a consensus among pediatricians that pediatric facilities will not be able to, and should not be required to, treat adults with chronic illnesses diagnosed during childhood. Physicians, nurses, and other health care professionals who treat adult patients have limited experience in managing what have historically been chronic conditions of childhood, even though more than 90 percent of these patients will survive beyond their 20th birthday. Changes in health care insurance and the education system's inability to prepare them for inclusion into society are examples of hurdles these adolescents and young adults must confront.

In 2001, the American College of Physicians-American Society of Internal Medicine, the American Academy of Pediatrics, and the American Academy of Family Physicians agreeagragreed that adolescents and young adults with chronic illnesses need an appropriate transition of their health care from pediatrics to the adult health care system. We must now think of many illnesses previously confined to childhood as diseases that begin in childhood and continue into adult life. The number of children and adolescents with chronic medical conditions has increased in the past 20 years, primarily due to the advancements in medical science.

While advances in medicine have increased the lifespan of these individuals, health care professionals typically hesitate to care for them because they have complicated health care issues and frequently are underinsured or even uninsured. A  recent article  in Archives of Pediatrics & Adolescent Medicine (2006;160:178-182) found that young adults with disabling chronic conditions are uninsured as often as those without disabilities.

 Additionally, this population requires time-consuming care, which often can be complicated by substance abuse or mental health problems. When they reach 21, many of them suddenly are no longer eligible for Medicaid or other government-sponsored services, or they encounter numerous barriers to receiving care with their limited resources. As a result, they tend to have the lowest primary care utilization rate of any age group and use the emergency room as their main or only source of health care.


Baylor's Solution

In 2005, Baylor College of Medicine opened a Transition Medicine Clinic. Our location in one of the largest academic medical centers in the country enables us to train interested primary health care professionals in the specific expertise needed to deliver age-appropriate health care services to adolescents and young adults with chronic disease or disabilities of childhood.

Staff physicians are trained in both internal medicine and pediatrics and thus are particularly well equipped to help this patient population.

We have been able to validate what the recent medical literature has stated about the practice of transitioning this group of patients to the adult health care system:

  • Transitioning is a process, not an event, and should start early; the preteen years are a perfect time to start the process. The adolescent/young adult must be made ready for the transition. The patients (and/or their families) not only must be knowledgeable about their disease process, but also should have it summarized to facilitate a smooth transition to an adult health care professional.
  • Pediatric and adult health care professionals should collaborate on the transition. Pediatricians must actively search out adult health care professionals in their community with whom they can work to transition this population of patients. If they are in an academic setting, they must petition the pediatric and medicine department chairs regarding the developing need for physicians to care for these patients.
  • Transition medicine is a practice and developing body of knowledge that needs support and infrastructure. Transition medicine clinics must exist so adult health care professionals can better understand the health care concerns of this group of patients, to develop practice guidelines for the adult care of specific childhood diseases, and to continue to help advocate for this population of patients.
  • Transition health care needs national recognition so this group of patients has uninterrupted health care coverage. Both health care professionals and families must be advocates for this population of patients and must work with local, state, and national governments to ensure that they continue to get adequate health care coverage. The coverage must include appropriate reimbursement to the physicians who deliver their medical care.
  • More health care professionals should be trained in the expertise required to care for this population of patients. Medicine-pediatrics doctors are the ideal physicians, but presently there are not enough programs in the United States to accomplish this goal. Both state and national funding is needed to help medical schools and graduate medical education departments train young physicians to care for these patients. Additionally, mental health care workers, psychologists, social workers, and nurses need training on the patients' specific health care concerns.

Dr. Peacock is the Combined Medicine-Pediatrics Program director, Internal Medicine Associate Program director, and Transition Medicine Clinic director at Baylor College of Medicine.


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