Improving social functioning in Prader-willi syndrome (year 2)


Social isolation and impaired social cognition underpins loneliness, depression and anxiety, contributes to poor health and reduced longevity. They also are associated with such cognitive consequences as impaired executive functioning, cognitive decline, a bias towards negative, depressive thinking, and oversensitivity to perceived social threats. People with intellectual or developmental disabilities, including Prader-Willi syndrome (PWS), are at heightened risk for social exclusion and isolation. These risks are associated with the historical institutionalization, marginalization and maltreatment of those with intellectual disabilities, as well as with persistent disparities in health, education and employment opportunities.

In the grant, we aim to recruit 50, 13 to 35 year olds with PWS into an intensive,10-week group intervention aimed at improving social skills, perceptions and thinking in Prader-Willi syndrome. Sessions will occur 3 times per week, and be conducted on-line using secure technology with 4-6 individuals per group. Groups will be led by skilled practitioners with expertise in PWS, and include tests of social and emotional functioning administered before, during, and after the intervention, and at 3 other times during a 4-month follow-up period. We will conduct 3 monthly Booster sessions to strengthen these skills after the intensive 10 week intervention has ended. Regular practice of skills is built into the intervention, with fun, motivating exercises conducted at home, in the community, and with the group leaders.

In the short-term, participants with PWS will be given the opportunity to improve their social problem-solving skills, perceptions and thinking. These are critically important steps in helping them to manage their anxiety, depression, other mental health problems, and to get along better with family members, staff and friends. In the long-term, we will use data from this grant to further test these interventions with NIH grant support. Our ultimate goal is to develop a validated, manualized social thinking intervention curriculum, tailored to those with PWS, that it can be disseminated and implemented by others in the PWS community.

Research Outcomes: Public Summary

A manuscript is being finalized that highlights the success of the BOSS program in teens and adults with PWS. These findings show decreases in maladaptive behaviors in PWS, as well as increased social connection. Parents also reported changes in social reciprocity/flexibility and general overall increase in social and emotional well-being after participation in the program. A book of the evidence based BOSS curriculum for teens and adults with PWS including the 30 lessons, facilitator and parents guide and downloadable stimuli for lessons are being shopped to Brookes Publishing and we hope to hear approval from the Brookes reviewers by the end of 2021.

Learn More!

Dr. Theresa Strong describes this grant, why we are excited about it and what the long term contributions of this project may be in our Research Grants Program Update Webinar, Spring 2018. You can learn more about this specific project in this video segment.

* Funded by the Foundation for Prader-Willi Research UK

Funded Year:


Awarded to:

Elizabeth Roof




Vanderbilt University

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