2024 Children's of Alabama/UAB Annual Report

“If you look across the health system, there is this gap that happens, which is true across many disciplines,” Hopson said. “Life changes are happening — they are leaving high school, trying to figure out what comes next, and right in the middle of that you have this transition in medical care, with brand-new doctors. If you look at the data, you really see how medical outcomes decline during this time.”

50 %

Dementia will affect 50% or more of people with Down syndrome as they age

Betsy Hopson, Ph.D, MSHA

director of UAB Sparks Pediatrics. With a grant from UAB’s HSF-GEF program, Khatri and Betsy Hopson, director of the UAB Staging Transition for Every Patient Program in the Division of General Internal Medicine, will create a new clinic to focus on care for people with Down syndrome across the lifespan. According to the National Institute on Aging, dementia will affect 50% or more of people with Down syndrome as they age, “and nothing existed for them,” Hopson said. “We are adopting a lifespan model, to be able to say to patients and parents, ‘this is where we know that you are going; this is the trajectory.’” Hopson and Khatri will be able to say to families, “we have a dedicated program that knows everything that will happen to your child and knows who the adult provider is to contact as they age,” Hopson said. “We are excited to build the entire lifespan program, but addressing the palliative and memory challenges will really make us unique to anywhere in the country.” The clinic traces its origins to a conversation that Khatri had with Mitch Cohen, M.D., chair of the Department of Pediatrics. Cohen asked Khatri, who is a member of the board of directors of Down Syndrome of Alabama, to look into reopening a Down syndrome clinic that had operated at Children’s of Alabama until about a decade ago. “We asked the community if this is something they wanted,” Khatri said. “A lot of the feedback we had was related to the issues with transition between pediatric and adult clinics.”

Carlie Stein Somerville, M.D.

“It is a very different experience in the pediatric world and the adult world,” Khatri said. “Insurance changes. What is covered changes. So being thoughtful in planning for these changes early is extremely important.” Khatri was aware of Hopson’s work with the STEP Program, which creates “transition champions” in both the adult and pediatric divisions “to have a warm hand-off,” Hopson said. “ “It is a very different experience in the pediatric world and the adult world. Insurance changes. What is covered changes. So being thoughtful in planning for these changes early is extremely important.””

– Snehal Khatri, M.D.

STEP was created in 2020 through an HSF-GEF grant awarded in 2019 to Hopson and Carlie Stein Somerville, M.D., associate professor in the

2024 Academic Annual Report

37