Clinical and Health Affairs
Transitioning Adolescents to Adult Care
Putting Theory into Practice
By Sheldon Berkowitz, M.D., FAAP
Abstract
Because many children with complex health conditions now live well into adulthood, they will reach an age when they can no longer be cared for in a pediatric practice. In order to help patients, families, and physicians prepare for and make the transition from pediatric to adult care, a group of concerned providers and family members met at Children’s Hospitals and Clinics of Minnesota to discuss the issues involved. They developed a document, the “Roadmap for Transitioning Adolescents from a Pediatric to an Adult Practice,” to help with the process and also identified barriers to accomplishing a smooth transition. This article describes the issues addressed by the group, how the Roadmap can be applied to children with various health needs, and what still needs to be done to help the process go more smoothly for patients and physicians.
At 2:15 p.m., in the middle of a busy day in your internal medicine practice, you notice a new patient on your schedule—a 21-year-old woman. As you step into the exam room, you see that she is wheelchair-bound and has a tracheostomy tube and a G-tube. She is nonverbal and is accompanied by her mother and her personal care attendant. You learn from them that she has been hospitalized too many times to count and has had numerous surgeries during her lifetime. You also discover that she has come to you because she is too old to be seen by the pediatrician who had been caring for her, is being followed by 7 different subspecialists, receives occupational and physical therapy, and takes 10 medications a day. Today, she needs 3 of her medications refilled. You have 15 minutes scheduled for this visit.
Transitioning adolescent patients from pediatric to adult medical care is a relatively new issue that has received increased attention in the medical literature during the last 6 years.1-7 It has become an issue in part because advances in neonatal and pediatric care allow more children with what were once considered to be life-limiting conditions to live well into adulthood. Many of the patients seen in the general pediatric clinics at Children’s Hospitals and Clinics of Minnesota, for example, have complex needs associated with conditions such as severe autism or Trisomy 21 (Down syndrome), or health issues associated with being born prematurely. Many of the 800 children seen in Children’s special needs program have rare chromosomal abnormalities that have caused severe developmental delays and left them unable to feed themselves or with central nervous system abnormalities, either on an anatomic basis (eg, hydrocephalus resulting in the placement of a ventriculoperitoneal or V/P shunt) or a metabolic basis. At some point, children with these and other complex health needs no longer will be able to receive care in their pediatric clinic, as most pediatricians follow the American Academy of Pediatrics guidelines and provide care to children and adolescents only until they are 21 years old.
The process of preparing adolescent patients and their families to leave a provider who may have cared for them since birth as well as an institution they have been going to all their lives may be emotionally difficult for both the patient and the family. This issue isn’t unique to physicians at tertiary care centers. It is something that all pediatricians and their patients will deal with at some point. But when the adolescent has complex health problems that family physicians, internists, and other providers who care for adults are neither familiar with nor comfortable treating (eg, significant congenital heart disease such as hypoplastic left heart syndrome or chromosomal abnormalities and syndromes such as 11q minus),8 actually making such a transition in real-life clinical practice can be very challenging for both the patient and the physicians involved.
Challenges for Patients with Special Needs
In early 2008, a group of concerned pediatricians, med/peds and family physicians, pediatric subspecialists, social workers, community advocacy workers, and parents gathered at Children’s to discuss the issue of transitioning patients from pediatric to adult care. There was broad agreement in the group about the various issues that need to be addressed in this transition process. However, one of the biggest stumbling blocks identified by both the med/peds and family physicians who were interested in assuming care for adolescents with complex needs was the lack of support within their groups.
They identified the following as challenges for physicians accepting these adolescents or young adults into their practices:
- The fact that these patients often need more than a 15-minute visit and that provider salaries are often productivity-based; the more time spent with a patient, the less they earn;
- The fact that it’s difficult to coordinate the care of patients with complex needs without the help of a care coordinator or a social worker, neither of which are usually available in clinics that serve adults;
- The fact that physicians may not feel competent caring for these young adults because they see the kind of complex conditions affecting them so infrequently;
- The fact that adult care tends to be patient-oriented, rather than family-focused. Most of these patients depend heavily on their families for ongoing care; and
- The fact that hospitals that serve adults may not be equipped to care for complex patients such as a 25-year-old who may only weigh 20 kg and be the equivalent of a 2-month-old developmentally.
The group decided that the first step in addressing these challenges would be to identify issues that must be considered when transitioning any adolescent patient to adult care, including at what age to begin the process, insurance concerns, and how to find new primary care and specialty providers. The second step would be to work with insurers to enlist their support for providers willing to care for these children as they reach adulthood. Members of the group believed it was very important to convince insurers that they as well as physicians, hospitals, families, and social service agencies have a role in these children’s care.
The Roadmap for Transitioning Care
In the 9 months that followed the initial meeting, a subcommittee developed a document, the “Roadmap for Transitioning Adolescents from a Pediatric to an Adult Practice.” In developing the Roadmap, they recognized that the process would depend on the complexity of the patient’s needs. Transitioning an “uncomplicated” adolescent patient—one who has no chronic problems or, at most, 1 or 2 relatively straightforward ones such as asthma, ADHD, or allergic rhinitis and sees no more than 1 or 2 subspecialists and takes no more than 2 or 3 medications for those conditions—is fairly straightforward. Moving a patient with more complex needs—say a 20-year-old with
an 11p chromosomal abnormality, developmental delays, and hypertension, who has been seen by multiple subspecialists and takes more than 5 medications—may take longer and involve more providers and staff members.
Members of the subcommittee agreed that 7 issues needed to be addressed when transitioning any adolescent patient into adult care regardless of their health status:
For More Information
To read the “Roadmap for Transitioning Adolescents from a Pediatric to an Adult Practice,” go to www.childrensmn.org, click on the “For Health Professionals” link, and locate the Roadmap in the “Resource Materials” section.
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1. When to start talking about the transition. This will depend in part on how complex the adolescent’s needs are and how much time it will take to accomplish the transition. It may also depend on the adolescent’s developmental state, as it may take some patients longer to get used to the idea of leaving their pediatrician.
2. Insurance issues. Most health plans allow adolescents to remain on their parents’ policy until they are 19 and, in some cases, until they are 24 years old. Patients who cannot continue on their parents’ policy will need to get their own coverage. Those who are on Medical Assistance will also have to deal with this, as coverage ends at age 18.
3. Guardianship issues, if applicable. If the patient has a significant development delay, he or she may need to have a guardian (eg, a parent) appointed by the courts to oversee his or her care.
4. When the transition to the new provider will occur. Some pediatricians require that patients find a new doctor when they turn 18; others will care for patients until they are 21.
5. Hospital and emergency department rules. Depending on a children’s hospital’s age cut-off for treating post-
adolescent patients, the family may need help finding another hospital.
6. Finding a new primary care provider. Transitioning the care of an uncomplicated patient from a pediatrician to either another physician in a multispecialty practice or to their parents’ physician might not be difficult. However, finding a physician who has seen or is comfortable working with a patient with complex health needs may be a bigger challenge. The patient’s pediatrician should help the new provider get up to speed on a patient’s medical history and the care he or she is receiving.
7. Determining whether the patient will need new specialists. If the child is already seeing specialists, will they be able to continue seeing them into adulthood? If not, those providers may be able to assist in finding new specialists who can assume care for the patient.
The Roadmap for transitioning care is designed to highlight these and other issues that need to be addressed at certain ages. It also differentiates what may be more important for a complicated patient as compared with an uncomplicated one.
The workgroup’s next challenge is to identify providers who have experience with and are willing to take on more complicated patients as they leave pediatric practices and to find ways to support providers who may not have worked with such patients but are willing to care for them. In the discussions that have taken place thus far, insurers, medical groups, and representatives from the Minnesota Department of Human Services are enthusiastic about trying to find ways to work together to make these transitions happen more smoothly.
Conclusion
As more patients with complex medical conditions live beyond adolescence, transitioning them from pediatric to adult care will continue to be a challenge. There are ways to more smoothly make the change, so a physician won’t be surprised to suddenly encounter a new 21-year-old patient with complex health issues in his or her office. Ideally, a patient’s pediatrician should have discussions with the new provider and send him or her a summary of the patient’s medical history and the care he or she is receiving before the patient shows up in the new provider’s office. If possible, the new provider should arrange for an extended first meeting with the new patient in order to help facilitate the transition. Finally, the pediatrician’s willingness to be available for consultations and to answer questions that may come up during the transition will help decrease the new physician’s anxiety about taking on the patient.
In the meantime, the workgroup at Children’s will continue to meet with insurers and other stakeholders to find ways to ease other aspects of the transition so that adolescents can receive seamless, high-quality care. MM
Sheldon Berkowitz is medical director of the Minneapolis Children’s Clinic, which is part of Children’s Hospitals and Clinics of Minnesota.
I would like to thank my colleagues who participated in the workgroup and in the development of the Roadmap, as well as Phil Kibort, M.D., chief medical officer of Children’s Hospitals and Clinics of Minnesota, for his support and assistance.
References
1. American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians, American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics. 2002;110(6Pt2):1304-6.
2. Knight P. What happens when chronically ill kids grow up. Houston Press. June 26, 2008.
3. Olsen DG, Swigonski NL. Transition to adulthood: the important role of the pediatrician. Pediatrics. 2004;113(3pt1):e159-62.
4. Scal P. Health care transition for youth with chronic conditions. Presentation at University of Minnesota, November 18, 2005.
5. Transitioning chronically ill adolescents to adulthood. UCLA Pediatric Update. 2007;14(1):3-4.
6. Wagner R. Assisting in the transition to adult-focused health care: what pediatric providers can do. Gillette Children’s Pediatric Perspective. 2007;16(2):
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7. Wallis C. Transition of care in children with chronic disease. BMJ. 2007;334(7606):1231-2.
8. Peter NG, Forke CM, Ginsburg KR, Schwarz DF. Transition from pediatric to adult care: internists’ perspectives. Pediatrics. 2009;123(2):417-23.