ICI, Gillette Children’s Collaborate for Better Services

Gillette Children’s and the University of Minnesota’s Institute on Community Integration are partnering on multiple studies aimed at bridging medical, diagnostic, and social aspects of care for children, youth, and young adults living in Minnesota with complex health conditions.

In one study for the Centers for Disease Control and Prevention (CDC), researchers at the Institute who are experienced in autism prevalence and surveillance studies are working with Gillette Children’s scientists who specialize in cerebral palsy research to estimate the prevalence of cerebral palsy among 4- and 8-year-old children. For another CDC study, the organizations are collaborating to estimate the prevalence of spina bifida across the lifespan to better understand its effects within communities and to inform public health policy.

And for the Health Resources and Services Administration (HRSA), they are partnering to develop better service coordination models for youth transitioning from high school to adult life who live with epilepsy and co-occurring cerebral palsy or other intellectual and/or developmental disabilities (IDD). This time of life can be challenging for teens as they move from pediatric to adult care and make decisions about disclosing their conditions at school or work, for example.

“The goal is to develop a Minnesota-specific, youth and family-centered model for service navigation across the education, health care, and vocational rehabilitation systems,” said Renáta Tichá, an ICI researcher with extensive experience in transition services and outcomes measurement. “This partnership is very exciting because we’re pushing boundaries as we combine the medical and social models of disability to develop a service model that can work better for families.”

Rhonda Cady, a Gillette Children’s clinical scientist and co-director of its health services research program, is working with Tichá on the HRSA project. Earlier in her career, Cady worked at the Institute with Brian Abery, whose work on building the self-determination of people with IDD made an impression that carries through to her work today as she focuses on the medical aspects of disability.

“Health is so important to independent living,” Cady said. “The hope is to, during this time from age 18 to 26, make sure that youth with epilepsy are being connected with the supports they need to stay healthy. By being in the best health they can be, they can pursue whatever their dreams are.”

Cady said that even patients with conditions that require close monitoring can often lose touch with appropriate care. Some lose trusted providers as they age out of pediatric services and can’t find an adult provider, or they lose age-limited insurance coverage. Others may simply reach adult legal status but lack self-care experience.

For the cerebral palsy surveillance work, ICI’s Minnesota-Autism and Developmental Disabilities Monitoring Network (MN-ADDM) team is gathering data to estimate the prevalence and characteristics of cerebral palsy in Minnesota using methods similar to those used for national autism prevalence estimates. Scientists and clinicians at Gillette are lending their expertise in cerebral palsy to classify and summarize complex data to ensure accuracy in reporting. Ultimately, the CDC will compare these data to other states.

Jennifer Hall-Lande, ICI’s principal investigator on the project, said Gillette Children’s brings important clinical knowledge to the prevalence study.

“Gillette is a world-renowned leader in cerebral palsy, and we needed their clinical expertise to help us extract the data correctly from medical records,” she said. “They’ve helped us shape aspects of the methodology to respond to the significant complexity involved.”

Hall-Lande said the team’s goal is to provide valid prevalence estimates that will improve understanding of cerebral palsy. This, in turn, will improve how professionals support children living with cerebral palsy and their families.

Prevalence estimates are used in numerous research grant applications and other work in the field, but U.S. prevalence data on cerebral palsy are outdated, said Chantel Burkitt, senior clinical scientist who co-leads the project for Gillette. Burkitt has also partnered with the College of Education and Human Development on previous work.

“Small sample sizes are a frequent limitation in research, so I’m excited with this study to have such a bigger look at a broad population and to partner with the people at the University of Minnesota, who have such a deep and profound understanding of autism prevalence methodology,” Burkitt said. “It makes for such a rich collaboration, and it’s exciting for the future of both CP and autism because we can explore new dimensions of both conditions.”

Because cerebral palsy can be difficult to diagnose and national prevalence estimates are vital, the team wants to make sure the surveillance methodology is consistent across states, said Meghan Munger, director of Outcomes, who co-leads Gillette Children’s work on the project with Burkitt. Munger, Burkitt, and Cady are University of Minnesota graduates.

“In addition to prevalence estimates, there is so much opportunity to understand better access to and receipt of services for the populations living with these complex conditions. This is traditionally challenging to understand, in part due to fragmented care delivery systems,” Munger said. “Bringing together experts in autism, cerebral palsy, and spina bifida with access to medical, social, and educational data unlocks a lot of opportunities.”