Anxiousness is a common challenge for our loved ones with PWS. Within the Global PWS Registry, caregiver-reported anxiety is an issue for 61% of individuals ages 10-14, and rises to almost 75% for individuals 15 and older.
Caregiver-reported data from the Global PWS Registry highlights how anxiety prevalence increases as people with PWS progress from childhood to adulthood. This common feature of PWS occurs at a is similar rate between males and females across all ages. With regard to genetic subtype, rates are similar in children, but by age 15 years and older, there is a significant increase in anxiety among individuals with the UPD subtype compared to those with deletion.
Caregivers of individuals 15+ reported rates of anxiety in 86% of individuals with UPD compared to 67% of individuals with PWS by deletion.
Collectively, these findings show that anxiety increases as people with PWS get older and that people with PWS caused by UPD may be especially vulnerable to anxiety. This is another example of how mental health symptoms in PWS may differ by genetic subtype.
Researchers are actively working to understand why people with PWS caused by UPD may be more susceptible to anxiety as they get older. They are also studying which therapies — including medications and behavioral interventions — may be most effective for treating anxiety in PWS, and whether treatment response may differ by genetic subtype.
Data from the Global PWS Registry will continue to inform this work and help us better understand which therapies are helping families.
