In urology, there are many conditions diagnosed in infancy and childhood that require lifelong care, which means that patients must ultimately make a transition from pediatric to adult care as they become adults. Teens with chronic disease and disabilities often struggle with this transition. While they may “age out” of the children’s clinic setting, many have not yet have developed the independence they need to take care of themselves, such as ordering medications, navigating health insurance, using transportation, and other skills crucial to living independently and caring for oneself.
In addition, many children with these conditions have complicated medical histories and have undergone extensive surgery as children. That means they require urologists who both understand the childhood diagnosis and have surgical expertise in case there is a need for future surgical intervention. Without dedicated urologists to take care of them, many of these patients do not have routine follow up once they graduate from their pediatric urology care.
“That transition time between pediatric and adult care is a very fragile time” says pediatric urologist Hillary Copp, MD, MS. “We’re expecting them to be more independent and take care of themselves at the same time they are falling off the medical radar. This makes the patients vulnerable to developing major problems. If they stop irrigating their bladder or completly catheterizing themselves, for instance, they can develop infections, bladder stones, or kidney problems. These can have serious repercussions.”
To help bridge the gap, UCSF’s Department of Urology opened a new center on its Parnassus Campus last spring to help young adults with congenital urologic conditions. Called the UCSF Transitional Urology Clinic, the center aims to provide uninterrupted and comprehensive healthcare for patients who were diagnosed with urologic issues as children and will continue to need urologic care as adults.
“With improving care, children with chronic urologic conditions now have a longer life expectancy and a need for long-term follow-up, which means they need further specialized care as they become adults,” explains adult urologist Lindsay Hampson, MD, MAS, who co-directs the clinic with Copp. “Their medical history is often quite complex and can be challenging for general urologists to manage on their own.”
“There is a nationwide discussion now on the need to provide specialized care for these young people,” she continues. “Our clinic is the first dedicated Transitional Clinic in the region, so we look forward to it serving not only the needs of our own patients, but also hopefully serving as a tertiary referral center for the broader geographic area.”
Says department chair, Peter R. Carroll, MD, MPH “The development of this clinic is a prime example of our overall mission to provide innovative, compassionate care to all patients.”
The Transition Clinic
UCSF’s Transitional Clinic treats patients with a wide range of urologic conditions diagnosed in childhood, including but not limited to, spina bifida with neurogenic bladder and bowel, disorders of sex development, cloacal anomalies, exstrophy and epispadias, cloacal anomalies, hypospadias, urologic cancers of childhood, vesicoureteral reflux, prune belly syndrome, and posterior urethral valves.
A group of pediatric and adult urologists discuss every case in a multi-disciplinary case conference before clinic. To integrate the pediatric and adult care, Drs. Copp and Hampson see every new patient together. “It’s so nice to work together,” Hampson says. “We each bring our own expertise. And if any surgery is needed, we do it together. The patients really benefit.”
“This is extremely important,” says Karen Bither, who is currently bringing two of her adopted children, Colette and Loyd, both 26, to the clinic. Over the years, Karen and her husband Harry have adopted nine children and fostered more than three dozen with chronic health conditions, especially spina bifida, a birth defect in which the spine and spinal cord don’t form properly in the womb.
“So much happens to these children when they are babies,” she says. “They get shunts placed and reconstructive surgery, or they develop chiaris or decubitis ulcers. The pediatric doctors need to be able to help the adult doctors understand what has happened. Plus there’s usually more than one problem, so having everyone working together, hearing the story at the same time, is really helpful. I’m grateful that Drs. Hampson and Copp recognized how difficult this transition can be and decided to set up the clinic.”
“Just give them a chance”
Karen and Harry had six of their own children, several of whom had chronic health conditions, including cleft palates, seizures, and one who suffered burns over 60 percent of her body. They began fostering their first child with spina bifida, Jason, in 1975 and then continued to adopt them as infants and toddlers because the parents often didn’t feel capable of caring for them.
“Most parents get such a bad outlook when they give birth to children with spina bifida,” Bither says. “They think their children will never do anything or be anything, and they’ll be such a burden. But it’s not like that at all. I wish they could know to just give them a chance.”
“These are special kids,” she continues. “They can do a lot. They wheel around in their wheelchairs and they often are very articulate. But they sometimes have trouble staying focused. They struggle with some social issues. Their bladder and bowel problems can disrupt families. But when you’ve seen a lot of these children, you can begin to see the patterns and learn to deal with them better.”
Colette Bither says that her transition from pediatric to adult care when she turned 21 five years ago was not easy. “It’s hard to go from a doctor who has known you your whole life to one who knows nothing about you,” she says. But now “I really like Dr. Hampson,” she says. “She asks good questions, like ‘what do you like to do?’ and ‘what’s your lifestyle?’ It’s like she really cares.”
“Now they talk to me”
Colette Bither says attending the clinic has helped her learn to manage her prescriptions and other care. “I like when they sit down and tell me what the medications are for and how much you should take and for how long,” she says. “When I was younger, they just talked to my parents about that. Now they talk to me.”
Hampson believes that part of the challenge is getting children with chronic urologic conditions “invested in their own care” so they can begin to take steps to be more independent. To that end, she and Dr. Copp are working with pediatrician and integrative medicine practitioner Dr. Brittany Blockman to work towards involving their patients in “Communitas,” a program at the Osher Center for Integrative Medicine devoted to improving the lives and well-being of youth with chronic illness. The program teaches patients mindfulness and meditation, provides peer support, coaches them on self-care, and also introduces them to other treatment modalities, such as massage, dance, yoga, and music therapy in an attempt to help them develop more resilience and higher quality of life. The Communitas program has been offered to children and young adults with a wide range of chronic illness, and Drs. Hampson and Blockman are seeking grant funding for the Transitional Urology patients to participate.
“A different focus of care”
Over the years, Karen has learned that one of the hardest tasks for young adults with spina bifida is forming and sustaining healthy relationships. “The bowel and bladder issues are horrible,” Karen says. “Emotionally, it makes it hard for them to have friends and hard to find someone to love, to be loved, to work with them, to have a sexual relationship.”
That’s part of what is addressed at UCSF’s Transitional Clinic, Hampson says. “As they get older, these patients tend to develop a different focus of care,” she says, “including being interested in sexual function, fertility, and pregnancy. These issues aren’t typically addressed by pediatric urologists. We want patients to start focusing on what their priorities are. At this age, their priorities may be different than the priorities of their parents and we want to ensure we’re addressing the things that will make an impact in their own quality of life, in addition to keeping them healthy from a urologic perspective.”
“It’s very rewarding to work in this clinic,” Copp says. “I see kids for whom I cared for so long developing independence. It’s a bright spot in my career. It makes me happy to work on something of such value and importance.” Adds Hampson, “The first year of the clinic has been great. Patients and families have appreciated it. It’s exciting that we are one of the only places developing this new model and trying to think about what kind of collaborations we can form to care for our patients.”
The clinic is actively seeking physical medicine and rehabilitation doctors, neurosurgeons, and nutritionists to be part of the team. “Our goal is to get other experts on board, so the Transitional Clinic provides the same comprehensive care that the pediatric clinic does,” Copp says.
“I always thought that with pediatrics was on the 6th floor and adult urology on the 8th floor, having something for teens on the 7th floor would make sense,” Karen Bither says. “I wanted a place where the kids could meet and talk and deal with teen issues. I’m so glad this clinic is now available.”