An extension of the nonprofit’s five-year-old, 26-member Certified Duchenne Care Center Program (CDCCP), the neuromuscular clinic at University of Missouri Health Care (MU Health Care) is the first in the new category of care centers. That category’s creation was precipitated by increases in the number of teens and adults transitioning from pediatric care.
“Improvements in Duchenne care, specifically in the areas of cardiac and pulmonary care, have thankfully led to a growing population of adults living with Duchenne, and PPMD is extraordinarily proud of the role we have played in emphasizing these areas of care,” Kathi Kinnett, MSN, PPMD’s senior vice president of clinical care and director of the CDCCP program, said in a press release.
“But because Duchenne has historically been a pediatric diagnosis, there is a lack of adult medical providers who are familiar with the subspecialty care and management necessary for our adult population,” she said.
While some Certified Duchenne Care Centers — which provide standardized, comprehensive care and services to children with pediatric Duchenne — can offer adults at least some aspects of care, none is specifically certified as having the resources to address older patients’ needs, Kinnett added.
Using the Centers for Disease Control and Prevention’s updated Duchenne Care Considerations for guidance, the CDCCP’s certification committee developed requisites for adult care. The committee was assisted by Raghav Govindarajan, a neurologist and director of MU Health Care’s muscular dystrophy clinic.
The academic medical center was the first to apply for adult-only certification. Following the application, MU Health Care was visited by certification committee members who conducted interviews, reviewed patient records, and visited the hospital’s clinic. Throughout, the process included discussions of issues relevant to adult patients, suggestions, and edited requirements. The committee is comprised of multiple parents and an adult Duchenne patient.
“Patients with Duchenne are living longer, but most of the care and research is focused on pediatric patients,” said Govindarajan. “MU Health Care is able to provide older Duchenne patients the comprehensive care they deserve because of our expertise, technology and collaborative environment. We are particularly thankful to our colleagues in physical medicine and rehabilitation, cardiology, pulmonology, palliative care, endocrine and therapy services. We look forward to being a role model for other adult centers seeking certification.”
Kinnett anticipates more adult-program applicants. “PPMD and the CDCC Certification Committee are incredibly excited about the ability to offer this important area of care,” she said. “We expect that, after the certification of the University of Missouri, many other centers will apply as well, including those centers that are providing adult care but are certified as pediatric CDCCs. Over the next few years, PPMD hopes to build a network of adult care as robust as the network of pediatric CDCCs that have been developed. Adults with Duchenne deserve this.”
Visit this site to learn more about the history of PPMD’s Certified Duchenne Care Center Program. MU Health Care’s roughly 6,000 highly specialized, multidisciplinary healthcare professionals serve patients from each of its state’s 114 counties. Outpatient visits exceed 500,000 annually, PPMD said.