Teenagers with chronic health conditions of almost any type share a unique distinction: Medical care has been a part of the landscape of growing up.
Over their childhoods, these young patients and their doctors form emotional bonds that can feel as healing as actual treatment. So when the time comes for young people to move on to adult health care, it's complicated.
How does one choose an adult doctor? When is the best time to make the change? Compared to the comforting manner of pediatricians, will adult doctors seem impersonal? Will they understand special needs?
Long accustomed to parents coordinating their medical care, teens on the brink of adulthood may feel ill equipped to be in charge. Parents, likewise, are uneasy. Should they -- can they -- let go of control?
For their part, pediatricians also may worry about the move to adult care. They are deeply invested in maintaining their patients' health and want that progress to continue. They, too, must let go.
This emotionally charged but little-discussed transition has long concerned Jonathan Pletcher, clinical director of adolescent medicine at Children's Hospital of Pittsburgh of UPMC. It led him to create an innovative pilot program that supports successful transitions for local patients and lays the groundwork for better health care practices for years to come.
Samantha Weyers, 17, of Cranberry is the type of teen the pilot project was designed for. The Seneca Valley senior has Ehlers Danlos Syndrome, a connective tissue disorder that causes loose joints and other problems, such as a tendency to break bones. Having the condition "is like trying to put together a house with Elmer's Glue," she drolly explained. Several specialists are involved in Samantha's health care, and she has already begun the transition to adult medicine.
Samantha is one of a handful of local teens serving on the youth advisory board for the pilot project. Members of the board -- called CHANGE (Children's Hospital Advisory Network for Guidance and Empowerment) -- meet regularly to discuss how to take charge of their own health care and to contribute ideas that can help Children's Hospital and the UPMC system improve policies and procedures for transitioning youth.
Parents and medical professionals are also part of the pilot project. When the youth advisory board meets, a group named Adult Allies of Health Care Transition convenes in a separate room for their own discussion.
Putting teens at the center of the health care transition is key, says Dr. Pletcher. "The goal is to empower them."
Between the ages of 16 and 21 is the right time to focus on building self-awareness and advocacy, he added, noting that the transition to adult health care runs parallel to other transitions youth with special needs make in the education and human services systems.
Dr. Pletcher, 44, a Robinson native and 1994 graduate of University of Pittsburgh Medical School, became concerned about the transition issue during his residency and fellowship at Children's Hospital of Philadelphia.
"Every pediatrician at a big children's hospital has a story about a young adult who suffered an adverse health event brought on by the transition process," he said. "We've seen terrible tragedies when there is lack of coordination between the pediatric and adult systems."
During his training, Dr. Pletcher also began to understand that engaging youth in their own care is essential. Youth need to understand their conditions and communicate clearly with their doctors, he said.
When he returned to Pittsburgh to work at Children's Hospital in 2006, he asked his supervisor, Elizabeth Miller, chief of the Division of Adolescent Medicine, to help him frame the issue in research terms.
In conjunction with the pilot project at Children's, UPMC's Disability Resource Center has identified transition to adult health care as one of its systemwide priorities for 2013. The effort comes at a time when more hospitals are taking a proactive role. "It's a huge issue across the nation," said the center's Karin Morris, who recently convened a working group on the subject.
At one of the initial meetings of the youth advisory board in September, facilitators Josie Badger, 28, and Mike Novitsky, 26, guided members through an exercise that involved using a skein of yarn to build a web that grew more complex as each person shared information about their medical conditions and frustrations. The facilitators also disclosed their own diagnoses and disabilities.
"I have a shunt," said Rachael Gniewkowski, 20, of Shaler, raising questioning looks from her peers. "It's a tube that goes from my head to my abdomen to drain fluid."
The difficulty of being a high school student with a medical condition also came up. "I almost got kicked out of school because of my disability," said Colin Grimm, 18, of Dormont, with more than a hint of exasperation. "I missed a lot of classes because of seizures. The school wanted me to go on homebound instruction. We fought that."
"Kids made fun of me at school because I use large print," Rachael added to the discussion.
Samantha Weyers recounted a time when she needed to use a wheelchair for most of a school year as she regained the ability to walk. "I felt so different," she said. "It was hard to be dependent on everyone."
After the discussion, Mr. Novitsky explained the metaphorical purpose of the yarn web. "We need each other. When you hold onto this web, you are a part of it. If anyone lets go, the web falters."
Indeed, the web-like interconnection of patient, parent and medical providers is the key to ensuring successful health care transitions, says Dr. Pletcher. "Transition is not just the transfer of care. It's a process," he said. "What can we change to make the process more effective? We are asking youth, parents and health care providers to answer that."
The CHANGE advisory board for youth ages 16 to 21 is still accepting applications for participants. The board will help plan a one-day conference on "youth-centered" transition to adult health care on April 17, 2013. For more information, contact Pauline Zorozak at 412-692-7711 or firstname.lastname@example.org.
Tina Calabro of Highland Park covers disability issues for the Post-Gazette. Contact her at email@example.com.