Eating disorders lab gains new designation as a center with continued goal to help improve access to better health

LAWRENCE — An article in your favorite magazine could have inspired you to explore how pressures of professional dance contributed to the death of a dancer.  

A professor might have called you out to commend you for your term paper, asking if you’d considered a career in research.  

You may have met people who drove for hours to access health care in rural Wyoming. 

These are among the chance encounters that have led to the launch of a dedicated research center at the University of Kansas focused on identifying and treating eating disorders. It's also laying the foundation for dozens of undergraduate and graduate students to enter the field.  

The Center for the Advancement of Research on Eating Behaviors, or CARE, is the newest center to become a part of the KU Life Span Institute, which for more than 70 years has been focused on improving human health and development. 

Leading the center are Director Kelsie Forbush, a senior scientist and professor of child clinical psychology, and Angeline Bottera, CARE associate director and assistant research professor. They are joined by a statistician, an administrative associate, three research project coordinators, seven graduate students and 20 undergraduate research assistants. 

The new designation as a center aligns resources to help them fulfill their mission of improving screening, intervention and treatment monitoring across gender, age, race and ethnicity. Eating disorders, which include anorexia nervosa as the second highest mortality rate of any psychiatric illness, are known to be difficult to identify in various populations and challenging to treat successfully.  

“Our goal is to create diagnostic systems and tools that are going to be clinically useful,” Forbush said. “We want to create a way of diagnosing eating disorders that's different from the traditional approach, scientifically valid, and that will help clinicians better predict who may be respond to treatment and who may need additional support.”

Early connections

Forbush was on track to pursue a professional dance career when she read a story in Dance magazine about 22-year-old ballet dancer Heidi Guenther, who died unexpectedly due to complications from her eating disorders. On a family trip to Disney World, Gunther’s heart gave out between the time it took for her mom to get out and refuel at a gas station. 

The story shocked Forbush, shaking her understanding of eating disorders, what they looked like and how serious they could be. 

“In dance, the body image messages you are getting are not always healthy,” she said.  

Forbush dove into the subject, trying to understand all she could about the disease. Later, during an undergraduate course, a professor called her to the front of the lecture room. 

The professor praised her for writing an excellent research paper about eating disorders, Forbush recalled. It was so well-written, in fact, that he urged her to consider a research career. While that wasn’t the future she had thought of, his suggestion planted the seed.  

“After I quit ballet, I didn't know if I'd ever find anything I was good at again or that I was passionate about pursuing,” she said, reflecting on her career.  

More than 20 years after Guenther’s death, Forbush sees a lot that still needs to be addressed in disordered eating. 

“People are truly slipping through the cracks,” Forbush said. "And there's not enough providers to serve the clients.” 

An established record 

Forbush, who brought her eating disorders research to KU from Purdue University, said that among the accomplishments of CARE was the development and validation of the Eating Pathology Symptoms Inventory (EPSI). The assessment tool is an inclusive eating pathology measure that can assess eating disorder behavior and thoughts across a range of populations more accurately and comprehensively than standard tools. 

The team also developed the BEST-U app, which stands for Building Healthy Eating & Self-Esteem Together for University Students. It is an 11-week treatment study for KU students with eating disorder concerns. More than 4,000 college students have been screened for eating disorders to date through BEST-U, and the research recently received funding to expand.  

“Watching a student who has an eating disorder at the start of the semester, but then at the end of the semester doesn't, is kind of magical,” Forbush said, describing her observations of students in the BEST-U program. “You see students engaging more in their classes. You see them engaging more with friends, relationships. It feels very powerful for me.” 

Other projects developed include the Smart Technology for Anorexia Nervosa Recovery (STAR) app, which was developed to address eating disorders in individuals who stepped down from higher levels of care, such as inpatient treatment, into community, outpatient care.  

CARE is also developing the Brief Assessment of Stress and Eating (BASE), which is a screening tool to help identify potential cases of eating disorders in veteran and active service members, with a $4.23 million grant from the Department of Defense. 

Forbush said she is looking forward to continuing to build connections and partnerships to support the needs of individuals with disordered eating. 

“The best research, to me, is work that's developed with communities, not necessarily for or ‘on’ communities,” she said. “I think it's important that we work with communities and that people understand the benefits of research.” 

What's ahead 

Forbush is excited for the impact of her work to continue to grow at CARE with its new center designation.  

Her center is continuing to help mentor the next generation of scientists on her team, who are developing their own approaches to addressing disordered eating through the perspectives of those who are Black and pregnant or postpartum, Hispanic and others. 

She said she hopes to address challenges to connecting people to care. 

“Another thing that I've really been focused on lately is there are great treatments for eating disorders, but often they're not used in day-to-day practice,” Forbush said. 

Sometimes this is because clinicians aren’t aware of the tools. And sometimes it’s because clinicians weren’t included in the development stage and the tools don't address the needs they have. In which case, she said, they aren’t going to use them, which is the most important part of her work. 

For Forbush, it isn’t enough to solve problems theoretically in a lab or even a center. The most important impact is the lives of individuals who benefit from the work at CARE, who can connect with others and focus on their goals for the future.  

“Some of the comments you get back from students really touched my heart. ... To hear some of their comments at the end when they didn't even think that they could recover, and then they did,” Forbush said.  

Bottera added that she and Forbush see CARE’s new status as a center as a way to help them more broadly engage with communities such as schools and rural residents.  

"We really want to make sure our work is reaching the people we want to reach, not just the eating disorder researchers that are reading the articles in labs," Bottera said.