January 26, 2018
By Kristi Birch
|Ryan Banning and Moya Peterson|
Moya Peterson, Ph.D., APRN, clinical associate professor at the University of Kansas School of Nursing, has been named the recipient of the 2018 Lillian Carter Exemplary Acts in Nursing Award, one of three Excellence in Nursing Awards sponsored by Modern Healthcare. Named after President Jimmy Carter's mother, this award honors a nurse or nursing program that has engaged in extraordinary acts of providing healthcare in areas of special need.
Peterson was nominated for her work directing the Adults with Down Syndrome Specialty Clinic in the Department of Family Medicine at the University of Kansas Medical Center. Peterson, who has a joint appointment in Family Medicine, founded the nurse-run clinic in 2009, in response to a growing need for coordinated primary health care for adults with Down syndrome, a genetic disorder that causes developmental delays and physical abnormalities. Specialty clinics already existed for children with the disorder, but because the life expectancy for people with Down syndrome has increased dramatically -- from age 26 in 1951 to age 61 today -- there are very few for adults.
Nearly a decade later, the clinic Peterson founded is, with the exception of a Chicago clinic that serves only patients in Illinois, the only clinic for adults with Down syndrome in the Midwest. And it is the only one that was created and directed by a nurse practitioner. "The Adults with Down Syndrome Specialty Clinic is an outstanding example of one person's commitment to making a difference," wrote Bob Page, President and Chief Executive Officer of the University of Kansas Health System, in a letter nominating Peterson for the award.
"Dr. Peterson is so very deserving of this honor. We are extremely proud of the work she has done at the Adults with Down Syndrome Specialty Clinic," said Sally L. Maliski, Ph.D., RN, FAAN, dean of the KU School of Nursing. "Without Dr. Peterson, this clinic would not exist, and many adult patients with Down syndrome in the Midwest simply would not have access to the excellent primary care the clinic provides. Dr. Peterson is truly inspirational."
One person making a difference
Peterson says she had never known anyone with Down syndrome until her senior year of nursing school in Illinois in 1976 when she was doing a rotation in a day clinic and met a young man who had the disorder. "I just fell in love with him," she remembered "He didn't have great language skills, but he could communicate. And we just had fun; he was such a loving guy."
Ever since, Peterson has been committed to working with these patients. When she moved to Kansas City and took her first job at Children's Mercy, there were many children with Down syndrome being treated for heart problems. "I always tried to get those kids because I loved taking care of them," she said.
In 1980, Peterson entered the Pediatric Nurse Practitioner program at the University of Iowa, where her thesis was a case study of a girl with Trisomy 21, a genetic term for Down syndrome that refers to the extra copy of chromosome 21 that causes the condition. In 1992, Peterson became the first nurse practitioner ever hired by the KU School of Nursing, where she also decided to get her doctorate in 2002. "I just knew I had to do something with Down syndrome," she said. "Especially because when I realized there was no healthcare for adults. Lots of kids 'graduate' from their pediatric program at age 21, and then they don't know where to go."
Three years after completing her dissertation about the experience of adults with Down syndrome and that of their families, Peterson started the clinic, a place for adults to get primary care.
Of course, adults with Down syndrome are free to seek care anywhere, but there is an advantage to getting primary care from, and establishing an ongoing relationship with, a provider who treats patients with the syndrome regularly and anticipates many of the problems that come with it: heart issues, obstructive sleep apnea, skin and thyroid problems. Peterson says she has seen about 400 different patients since the clinic opened, and the clinic gets 350 patient visits a year. Most of the patients are in their twenties through their fifties, and in addition to Kansas and Missouri, she has seen patients from Iowa, Arkansas, Nebraska, Oklahoma, South Dakota, and Indiana.
Peterson stresses that physicians, nurses and staff in Family Medicine have been critical to the success of the clinic. She also has a dietitian who comes in once a month. Some of her work at the clinic involves referring patients to health care providers she knows at the KU Medical Center. "I have a network of specialists I know who will treat my guys well and be patient with them," she said.
Martha Banning has accompanied her son, Ryan Banning, who has Down syndrome, to see Peterson for years. Banning was prepared to fly to a clinic with Ryan before she discovered the clinic at KU when she did a search on the Internet. She said her son sees a family practice physician near home in Lawrence, Kansas, for acute care, but for physicals and check-ups, they make the drive to Kansas City. "One of the best things about the clinic is that it's led by Moya Peterson. There are so many qualities about her that make a huge difference. She has knowledge about Down syndrome health issues that not all practitioners have," said Banning.
Equally important to the medical knowledge, said Banning, is the way Peterson relates to Ryan: "She treats him with dignity and respect. She listens to him and asks him questions. I cannot tell you how many times I've been to a practitioner who talks to me like Ryan is not even in the room, but with Moya Peterson, Ryan is part of the team. And she sees me as a team member also-- he takes into account what I, as Ryan's mom, have to say."
When Peterson isn't at the clinic, she is teaching at the KU School of Nursing and believes in introducing students to people with this disorder so they are prepared to treat them after they graduate.
She has served on the board of the Kansas City Down Syndrome Guild and is the only nurse practitioner on a task force of health care professionals writing national guidelines for the care of adults with Down syndrome.
Peterson says she would like to see the clinic expand into a center, offering services beyond standard primary health care. "I'd like to have people who could talk to the adults about social needs, about employment. My older patients are survivors. Their parents had to fight for them; they were told their baby was going to be a burden; they had to fight to get them into the school system, let alone housing and employment" she said. "But it's different now. This is a new phenomenon. We need to be concerned about these patients and figure out their needs and how we can assist them."