Transition of Care
JOHNSON CITY (June 22, 2018) – An East Tennessee State University faculty member and chair of the Department of Audiology and Speech-Language Pathology recently received international recognition for research she is conducting related to young adults with cleft lip and palate (CLP).
ETSU College of Clinical and Rehabilitative Health Sciences’ Dr. Brenda Louw and her research partner, Dr. Linda Vallino, head of the Craniofacial Outcomes Research Laboratory and senior research scientist at DuPont Hospital for Children in Delaware, served as the guest speakers at the 12th Australian Cleft Lip and Palate Conference, held in Sydney, Australia, last month.
During the conference, which was attended by individuals from multiple disciplines involved in CLP care as well as parents of children with craniofacial disorders, the pair presented a paper addressing the transition of care from a pediatric team to adult-centered care for a young adult with CLP.
“CLP is erroneously viewed as a childhood disorder, but children born with CLP grow up to be adults, and although the majority of adults with CLP adjust well to their birth defect, many continue to face multiple challenges,” Louw said. “An interdisciplinary team approach is the standard of care for patients, but it ends abruptly at age 18 and the transition to adult-centered care is fraught with challenges including limited access to experienced providers, insurance coverage and more.”
Through their research, Louw and graduate students from ETSU surveyed CLP teams around the world and found that less than 10 percent of the teams had a transition of care plan in place and few adult-centered CLP teams are available in the United States.
Louw and Vallino address those gaps by proposing a person-centered, evidence-based service delivery framework. Louw also currently is mentoring a research project on the perceptions and experiences of young adults with CLP regarding transition of care to further inform the proposed model.
The researchers have presented their findings at three national conventions, but Louw said the recognition on the international level is significant.
“This provided us with an exciting new international platform and audience,” she said. “We have returned with enthusiasm and dedication to continuing our work on this proposed model.”
Louw and Vallino are now working to develop and disseminate practical strategies for preparing young adults for the transition to adult-based care as well as tools to measure the impact of transition of care on the quality of life of the patients.