The Culture of Different MKTG_150064494_2018 Service Line Big Book Full_FIN | Page 76

The Culture of Different PA G E 74 NEPHROLOGY A Complementary Understanding Early in his career, pediatric nephrologist Bradley Dixon, MD, found himself at the bedside of a 6-week-old baby with atypical hemolytic uremic syndrome, or aHUS. The infant’s complement system was attacking his endothelial cells, triggering massive clotting in the capillaries of multiple organs. Untreated, the disease would lead to kidney failure and eventual death. Peer-to-Peer Adherence (From left) Transplant psychologists Cindy Buchanan, PhD, and Elizabeth Steinberg, PhD, lead a weekly video chat with teens who have undergone solid organ transplant. Focused on adherence, the chats let teens share strategies with each other. “Transplant is not a cure,” remarks Elizabeth Steinberg, PhD, a licensed clinical psychologist with the Transplant Program at Children’s Hospital Colorado. “It’s trading one disease for another.” Education helps, but hearing it from an adult only goes so far — especially when teens have heard it a million times. Drs. Buchanan and Steinberg created a virtual group where they can hear it from each other. Predicting post- transplant success The post-transplant disease is a lot more manageable, but it still requires a battery of medi cations. Remembering to take them can be difficult, particularly for teens. Each week for five weeks, teens with transplants connect via secure telemedicine software to a video chat led by one of the doctors. They talk about setting goals, overcoming barriers, negotiating peer pressure and other topics — but it’s not the topic that matters so much as the fact that they’re talking about it together. “We talk a lot about adherence strategies, whether that’s establishing a routine, using pillboxes or a tracking system, or doing some type of reinforcement or reward,” says Cindy Buchanan, PhD, the Transplant Program’s other licensed clinical psychologist. “We don’t know yet what this is going to do for their adherence levels,” says Dr. Buchanan, “but we do know they’re enjoying it.” Adherence is the biggest behavioral issue facing not only teens who have had a transplant, but also those waiting. Through a multidisciplinary grant, Drs. Steinberg and Buchanan are collaborating with transplant surgeons to identify issues like noncurrent immunizations or drug use that could delay placement on the list. These pre-transplant screening tools also gather data on risk factors that could impact post-transplant success. “The more we can predict those factors, the better we can intervene,” says Dr. Buchanan. “We’re clinical psychologists, but we’re also research psychologists, so we’re always looking for ways to improve.” "We've had two cases of aHUS in the last three months," says pediatric nephrologist Bradley Dixon, MD, who specializes in the condition. "For an ultra-rare disease, the fact that we've had two in recent memory really says something." “It was a rare condition, poorly defined and understood, but we were able to recognize it and make it better,” Dr. Dixon recalls. “That really sparked my interest in complement.” Pediatric nephrologist Bradley Dixon, MD, and immunologist Ashley Frazer-Abel, PhD, talk over a case at Exsera BioLabs at the University of Colorado School of Medicine. He developed one of the nation’s first comprehensive platforms for clinical laboratory testing for aHUS. Now at Children’s Hospital Colorado, Dr. Dixon numbers among the world’s foremost clinical experts on aHUS and other kidney diseases of the complement system. Working with leading researchers — such as University of Colorado immunologist and Director of Exsera BioLabs, Ashley Frazer-Abel, PhD, who is breaking new ground in the study of complement proteins — he hopes to conduct several clinical trials of new and better ways to diagnose and treat aHUS and other complement- mediated renal diseases. “We’ve traditionally had little to offer these patients from a treatment perspective,” he says. “Which is why, with so many new advances in diagnostics and treatment in the pipeline, now is such an exciting time to care for them.” The Culture of Different 75