For 26 years, Amy Remillard has seen Julie Biller, MD, for her cystic fibrosis – first as a teenager at Children's Hospital of Wisconsin (Children's) and later at the Adult Cystic Fibrosis Program at Froedtert & the Medical College of Wisconsin (F&MCW). Dr. Biller and her colleagues have helped Remillard through the transition into adult care, a lung transplant and many challenges in between.
"The connection the doctors and nurses make with their patients is paramount in helping patients become independent," says 45-year-old Remillard of Waukesha, Wisconsin. "The pulmonary staff invests knowledge and resources to guide us to become independent adults, and provide the tools for us to find our inner strength."
Thanks to new and improved treatments, ever more children are surviving serious conditions ranging from cystic fibrosis to congenital heart disease to cancer. As these children grow up, they must navigate the transition from pediatric to adult care and into programs that understand their complex medical histories and how these might impact their health as adults. To that end, physicians at MCW have created programs designed to meet those patients' special needs.
Collaboration is key to the success of the Cystic Fibrosis Center, which includes the pediatric program at Children's and adult program at Froedtert. Both programs work as a team, meeting monthly and producing joint newsletters and patient/family education. The Center has won two national quality care awards in the past decade and now is working on a quality improvement initiative to enhance transition care. "Transitioning to adult care starts with the diagnosis," explains Dr. Biller, the Center's co-director and professor of medicine at MCW. "The transition is taking children who do not have capacity to care for themselves and turning them into young adults who can gradually take on care of their chronic health problems. The handoff – when patients go from pediatric to adult care – is the last part of the transition."
The Center regularly assesses children's understanding of their diseases and medications, provides education and encourages patients to get more involved as they get older. The transition work often continues even after not-quite-independent young adults enter adult care.
Pediatric cancer survivors also need the right support as they grow into adulthood. The Next Steps Survivor Clinic at Children's MACC Fund Center for Cancer and Blood Disorders usually sees patients up to age 30. "These are typically complex patients who have a fairly high incidence of complications later in life," says Michael Kelly, MD, PhD, associate professor of pediatrics at MCW and director of the Cancer Program at Children's. "Two-thirds of adult survivors of pediatric cancer have complications that interfere with daily living and can affect their ability to do well in school and in jobs." When it's time to transition to adult care, Next Steps helps patients find the right primary care provider and connect with other community resources. "We also provide those physicians and nurse practitioners who are ultimately going to care for our patients with guidelines for chronic care and surveillance," Dr. Kelly says.
To provide the best care for the growing population of adults living with congenital heart defects, Children's and F&MCW created the Wisconsin Adult Congenital Heart Disease Program (WAtCH) in 2004, which now is among the top-10 busiest adult congenital heart programs in the nation. Knowing that some teens don't understand the basics of their heart defects, WAtCH connects with young adults early in their lives. "It's critical to ensure a smooth transition before young adults get busy with college and first jobs," says program director Michael Earing, MD, professor of pediatrics at MCW. "It's really important that anyone who has had congenital heart disease as a child continues to get regular care every one to two years."
– Nicole Etter
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