Growing pains for special-needs youth
How to transition from pediatric to adult care
Ensuring age- and condition-appropriate medical care for young patients with special health care needs is challenging enough, but one aspect of their care that may not receive the attention it merits is the effect on a child when he or she is forced to transition from pediatric to adult care.
"The process of moving from pediatric to adult-oriented medicine is an important and necessary process in the lives of all adolescents and young adults, especially those with disabilities and special health care needs," according to John G. Reiss, PhD, of the Institute for Child Health Policy at the University of Florida in Gainesville.
Reiss, who has done extensive research on health care transition, and colleagues at the University of Florida and Georgetown University recently completed a study on health care transition, the findings of which appeared in the January issue of Pediatrics.
More children crossing threshold
In 2002, the American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physician/American Society of Internal Medicine issued a consensus statement on health care transitions for children with special needs and at that time, reported that nearly 500,000 children with special health care needs migrated from pediatric to adult care each year.
This marks a tremendous change from a generation ago, when most children with severe disabilities died before reaching maturity, the consensus panel authors wrote. Today, most young people with special medical needs survive to adulthood and must move from their pediatric clinician — in many cases, the physician they have grown most familiar and comfortable with — into adult care.
"Many adolescents and young adults with severe medical conditions and disabilities that limit their ability to function and result in complicating social, emotional, or behavioral sequelae experience difficulty transitioning from child to adult health care," the consensus panel found. "There is a substantial number whose success depends on more deliberate guidance."
Reiss and his colleagues, in the more recent study, looked at health care transition from the perspectives of the patient, the provider, and the patient’s family. The health care issues facing the children involved in the study were chronic diseases such as asthma, cancer, cerebral palsy, AIDS, sickle cell anemia, developmental disabilities, birth defects, and ongoing effects of trauma and head injuries.
Among the barriers to successful transitions from pediatric to adult health care is lack of preparation, Reiss says.
"[Health care transition] was found to be abrupt, with little or no preparation before transfer from pediatric to adult-oriented providers," Reiss states. "In many instances, age — rather than indicators of maturity or independence — was used as the trigger for transition."
The 2002 consensus panel recognized this problem, as well, and incorporated into its consensus statement — which was adopted as policy by all three bodies — a finding that, just as the Individuals with Disabilities Education Act requires a plan for education transition, health care providers should plan for health care transition for patients with special needs.
The panel determined that pediatric providers should create written health care transition plans by the time their young patients reach age 14. The plans should spell out what services should be provided, by whom, and how they will be paid for. They also should be updated annually and whenever a transfer of care occurs, the panel report states.
A well-timed transition from child-oriented to adult-oriented health care, the panel concluded, allows young people to optimize their ability to assume adult roles and functioning. While for many children with special health care needs, this change will mean a transfer from a child to an adult health care professional; whereas, 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.
"Other suggestions involved helping the young person become an expert in his or her own medical condition, improving his or her understanding of the difference between pediatric medicine and adult-oriented medicine, providing young adults with opportunities to practice independent disease management, navigating the adult health care systems, and promoting peer-to-peer information sharing," Reiss says his team’s study found.
From more supportive to less supportive
Reiss states, among many of the young patients he and his colleagues studied, the differences between adult and pediatric care were unsettling.
Among the things the patients and their families did not like about growing into adult care was the expectation of independence they found in adult-oriented medicine, compared to the supportive, family-centered approach they’d experienced with their pediatric providers.
"Young adults and their families also were reluctant to leave familiar and trusted health care providers and settings," Reiss says. "The supportive nature of pediatrics was observed to foster dependence in the young adult, which made transition to [adult-oriented providers] difficult."
Reiss and his team found the young patients’ cognitive abilities had an influence on how well they were able to transition from pediatric to adult care. Those with impaired cognitive ability, but who are able to live independently, transitioned successfully with some additional support. Patients with severely impaired cognitive ability had significantly more problems with transition.
Patients, families, and providers who participated in focus groups for Reiss’s study told researchers young people whose conditions are progressive in nature and likely to cause death at a young age should probably not transition to adult-oriented care unless the change is desired by the family.
Transition happens in stages, families say
Reiss says participants in his study saw transition as a three-stage process that begins with "envisioning a future," progresses through an "age of responsibility," and concludes with the "age of transition."
"Envisioning a future" begins as soon as the disability or special health need is identified. Families said envisioning their children growing to adulthood helped them promote future planning. Participants recommended the transition process begin early. One parent told Reiss, "[The pediatric specialist] was a very firm believer in the children taking responsibility for their own health care. So, when Bobby was 2½ years old, he started answering his own questions when we came to clinic and, as a family, we started rehearsing those questions and answers on the way to clinic."
"Age of responsibility" is the second stage delineated by participants. It is during this stage that family members lay the foundation of future independence by teaching and giving responsibility to the child to carry out tasks of daily living and medical self-care. Examples include talking with health care providers, ordering and taking medications, and developing positive medical habits and routines.
The "age of transition" is the point at which the child draws on the groundwork laid during the previous two stages, and makes the transition to adult-oriented care.
But whether they observed stages of transition, participants told Reiss there was one almost universal factor in children’s move from pediatrics to adult medicine: age. Most pediatric systems generally use the ages of 18 or 21 as the limit for providing services. Age limits were also related to service providers’ expertise and comfort with providing certain services, Reiss says. Examples identified by participants included the refusal of pediatric anesthesiologists to provide anesthesia services to adult patients in children’s hospitals and the licensing guidelines for pediatric nurse practitioners that limit treatment to individuals younger than 25.
Consensus panel suggestions
The 2002 consensus panel on health care transitions drew up a list of six suggestions to help ensure that the transition from pediatrics to adult-oriented care — and the transition from young child to young adult — is eased, rather than made more difficult:
- A young person with special health care needs should have an identified health care professional who attends to the unique challenges of transition and assumes responsibility for current health care, care coordination, and future health care planning.
- Identify the core knowledge and skills required to provide developmentally appropriate health care transition services to young people with special health care needs and make them part of training and certification requirements for primary care residents and physicians in practice.
- Prepare and maintain an up-to-date medical summary that is portable and accessible, to provide a common knowledge base for collaboration among health care professionals.
- Create a written health care transition plan by age 14 together with the young person and his or her family. At a minimum, this plan should include what services need to be provided, who will provide them, and how they will be financed. This plan should be reviewed and updated annually and whenever there is a transfer of care.
- Apply the same guidelines for primary and preventive care for all adolescents and young adults, including those with special health care needs, recognizing that young people with special health care needs may require more resources and services than do other young people to optimize their health. Examples of such guidelines include the American Medical Association’s Guidelines for Adolescent Preventive Services (GAPS), the National Center for Education in Maternal and Child Health’s Bright Futures: Guidelines for Health Supervision of Infants, Children, and Adolescents, and the U.S. Public Health Service’s Guidelines to Clinical Preventive Services.
- Ensure affordable, continuous health insurance coverage for all young people with special health care needs throughout adolescence and adulthood. This insurance should cover appropriate compensation for health care transition planning for all young people with special health care needs, and care coordination for those who have complex medical conditions.
- AAP, AAFP, ACP-ASIM Consensus Panel. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics 2002; 110:1,304-1,306.
- Reiss JG, Gibson RW, Walker LR. Health care transition: Youth, family, and provider perspectives. Pediatrics 2005; 115:112-120.
- John G. Reiss, PhD, Institute for Child Health Policy University of Florida, Gainesville. E-mail: email@example.com.