Prader-Willi Clinic helps coordinate complex careSep. 13, 2018, 10:50 AM
by Jessica Pasley
For nearly one year, Mary Howard spent hours driving from her home in Columbia, Kentucky, to get medical care for her youngest child, Emily.
Diagnosed with Prader-Willi syndrome, Emily’s condition required multiple trips to doctors’ offices in search for specialty care that was not always available on the same day nor in the same location.
That all ended when she heard about the comprehensive, multidisciplinary Prader-Willi Clinic at Monroe Carell Jr. Children’s Hospital at Vanderbilt.
“Everything at Vanderbilt is rolled into one appointment,” said Howard. “It is usually an all-day event, which is awesome. I am not spending five hours driving to one appointment and doing that all over again for the next five doctor visits every month.
“The Prader-Willi Clinic at Vanderbilt is such a time and money saver. The neat thing about it? Most of the doctors come to us. They round on us. We are not having to trek throughout the facility, clinic to clinic. This is much easier on me and most definitely better for my child.”
Howard has been coming to Vanderbilt’s clinic for nearly a year. She said the one-stop shop concept is invaluable to her.
Opened in 2017, the clinic serves patients with the complex genetic disorder that affects appetite, growth, metabolism, cognitive function and behavior. It is characterized by developmental delays and intellectual disability, short stature, behavioral concerns, sleep abnormalities, underdeveloped sex organs and the inability to achieve satiety.
The clinic’s director said the collaborative care model is a first of its kind in the region. It was recently the focus of a national Prader-Willi syndrome conference held Sept. 8 at Children’s Hospital, sponsored by the Prader-Willi Syndrome Association USA.
The organization brought in about 30 parent-mentors for an in-depth look at the Vanderbilt clinic as well as held workshops for the group. Clinic faculty and staff served as facilitators, presented standards of care for Prader-Willi and led discussions on research and cutting-edge practices.
“We served as the clinical experts for this conference,” said Jessica Duis, MD, MS, assistant professor of Pediatrics at Vanderbilt. “Being able to serve as a resource for families from all over the country was amazing. We are beginning to interact with more families who are traveling far distances to attend our clinic.
“It was uplifting and reaffirming to hear how much families receiving care at other centers across the country appreciated our practice model,” said Duis.
The conference was an opportunity for patient mentors to learn, connect and be supported, said Duis and Howard.
“Conferences like this are so vital for our community,” said Howard, speaking of families and individuals with Prader-Willi. “The more knowledge I have, the better able I will be to help others.
“When Emily was born, we were given a real doom and gloom view of the disorder. But what I found and what I needed was support. Dr. Duis and her team have been optimistic, but very real about what we are dealing with and what to expect.”
Howard, a mother of five, has two families assigned to her and hopes to gain additional insight on how best to help them navigate the complex medical condition.
The two-day, educational conference provided structured sessions on current trends in dietary management, information on dietary supplements, abnormalities in sleep/wake cycles, growth hormone therapy and other vital resources for parent mentors.