Many of the 120 physicians in attendance call for this one-of-a-kind program to be replicated locally, regionally and nationally with other medical conditions – not just Tourette Syndrome.
NEW HAVEN, Conn. – When the nearly 120 Yale School of Medicine faculty and trainees in child psychiatry, psychology, social work and pediatrics crammed into the Cohen Auditorium on October 8, they knew the Patient-Centered Medical Education (PCME) presentation delivered by the team from the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) would provide insight into their areas of expertise and study.
They were aware that a rare opportunity to hear directly from adolescents, young adults and parents about the perspectives, stresses and needs of living with TS and its associated neurological conditions was in front of them and could help them better diagnose and treat conditions such as TS, which affects 1 in 100 kids and adults.
What they didn’t expect was the kind of program that, in their own words, can serve as an educational model for instructing physicians and family practice residents specializing in just about every type of medical condition across the nation. But that’s what they got when NJCTS Peer Advocates Grace Hawruk, 17, Tommy Licato,14, and Tess Kowalski, 14, teamed up with Dr. Stuart Green of Overlook Medical Center in Summit, N.J., NJCTS Education Outreach Coordinator Melissa Fowler and Tess’ father, Tim Kowalski, to – in the words of Dr. Andres Martin, Editor of the Journal of the American Academy of Child Psychiatry, “put a human face on the problem.”
“The kids were really terrific,” added Dr. Martin, who along with Yale Child Study Center Professor of Child Psychiatry Dr. Robert King, introduced the PCME panel. “It made all the difference hearing from the kids and parents themselves, rather than just referring to charts and numbers. It was a real reminder to us all of why we are here and doing what we’re doing.”
Martin was not alone in coming to that conclusion. After absorbing all of the PCME learning objectives – identifying and differentiating between the signs and symptoms of patients with varying tic disorder; describing and identifying the most common associated conditions in individuals with TS; giving the latest advances and comprehensive approaches for treatment for individuals with tic disorder; and presenting a patient-centered perspective of life with TS – prominent Yale University professor Dr. Jim Leckman was thoroughly impressed.
“It was wonderful opportunity for me to see in action the things I try and do myself,” said Dr. Leckman, a Neison Harris Professor in the Yale Child Study Center and Professor of Pediatrics and Psychiatry at Yale who has worked with individuals affected by Tourette Syndrome for more than 30 years. “To make this happen around the country and around the world is exactly what needs to be done. It will only make things better for all of us.”
Heidi Grantz and Dr. Lawrence Vitulano, the Clinical Director and Associate Clinical Professor, respectively, at the Yale Child Study Center’s TS/OCD Clinic, each were particularly moved by the “honest,” “real” and “moving” nature of the teenagers’ personal testimonies.
“This presentation is something we would love to be able to implement here, where we can have our patients learn to become advocates,” Grantz said. “What was most impressive about what they had to say was how they find TS has defined their lives in really positive ways, ways that have provided them with confidence to move forward in life.”
“I have been working in the field for 28 years, and this truly was one of the more impressive presentations I’ve heard,” Dr. Vitulano added. “The kids weren’t merely primed to tell us what they should be telling us. Their stories were personal and will have a profound effect on me as I continue to study self-esteem as one of the collateral problems of having Tourette Syndrome.”
Since its inception in 2010, the PCME program has been presented by NJCTS at more than 15 hospitals in New Jersey. For more information about the program, or to schedule it at your location, please call 908-575-7350 or visit www.njcts.org.