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Telehealth: PWS Healthcare Through Your Computer

Studies are underway on working with families to improve social, emotional, and behavioral functioning in children with PWS via telehealth.

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Telehealth, or the "delivery of health-related services and information via telecommunications" such as through a computer is a growing trend in health care. A recent report from a group at Michigan State University shows how their online program is successfully helping parents of children with autism interact with their children to improve their child's social communication.

This study lasted 12 weeks and included 28 parents that participated in a combination of online and video-conferencing lessons for ~1-2 hours per/week, and then implemented the techniques they learned with their children. Some parents received self-directed online lessons only, while others also received 1-on-1 video conferencing with a therapist. All of the parents reported that their children had improved social and communication skills, although the parents that received 1-on-1 help saw a larger benefit.

The long-term goals are to create stepped up levels of telehealth based upon severity of the child's behavior, and to have a way of identifying which families need more than just self-directed web-based lessons to benefit from telehealth training. Overall, telehealth provides relatively low-intensity, low-cost therapy which is especially critical for medically underrepresented groups and underserved areas or countries.

It is exciting to know that there is telehealth research currently underway in PWS as well!  Dr. Anastasia Dimitropoulos at Case Western currenlty has two studies working with families to improve social, emotional, and behavioral functioning in children with PWS. FPWR is proud to be supporting one of these projects Evaluating the Parent-focused Remote Education To Enhance Development (PRETEND) Program in PWS. Information on how to participate can be found here. We look forward to hearing about the results from this interesting work!

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Topics: Research

Jessica Bohonowych

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Jessica Bohonowych is a graduate of Duke University, and holds a PhD in Pharmacology and Toxicology at the University of California, Davis. Incorporating her research background, knowledge of pharmacology and drug development, and teaching experience, Jessica works with Theresa Strong in managing FPWR’s grant portfolio, communicating research results and breakthroughs to our community, aiding in special projects such as the Clinical Trials Initiative and Molecular Resource Center, and is heading the development of the Global PWS Registry.