The FPWR research team recently published a new study that helps us better understand mood, general health, and life satisfaction in individuals with Prader-Willi syndrome (PWS). The findings are based on data collected through the Global PWS Registry using three widely accepted questionnaires—tools that have been used extensively in other populations but not previously applied at scale to PWS.
Why We Did This Study
As parents and caregivers, we know that PWS affects many aspects of a person’s life—from physical health and emotional well-being to overall quality of life. People with PWS often face complex challenges such as intense food-related behaviors, mood fluctuations, anxiety, and behavioral difficulties.
While families live with these challenges every day, there has been relatively little research to measure how they affect overall happiness, health, or risk for depression. This study set out to fill that gap by providing a clearer picture of how individuals with PWS are doing in these areas—across age groups and experiences.
What the Study Involved
For this study, over 500 parents who are part of the Global PWS registry were asked to fill out three new questionnaires:
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A well-known depression survey, Glasgow Depression Scale - Carer Supplement Version, which helps identify signs of possible depression in individuals with learning disabilities.
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Two quality of life surveys from PROMIS (Patient-Reported Outcomes Measurement Information System): one measuring general health, and one measuring life satisfaction
These caregiver-reported tools are especially useful for individuals who may have difficulty completing self-report surveys—making them well suited for people with PWS.
Key Findings
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About 1 in 5 individuals with PWS showed signs of possible depression based on caregiver responses to the Glasgow Depression Scale.
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On average, people with PWS scored lower on the PROMIS general health and life satisfaction surveys compared to the general population, indicating greater struggles with health and happiness.
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Mood, health, and life satisfaction scores tended to decline with age, although some caregivers reported high scores in each area at every age.
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Caregivers who had previously reported depression in their loved one through the Registry’s mental health survey also reported lower health and life satisfaction scores and higher depression scores using these new tools—suggesting these tools accurately reflect what families observe in day-to-day life.
Why This Matters for Families
This study reinforces what many families already know: emotional and quality-of-life challenges are common in PWS, and they may become more pronounced with age. Importantly, the study also shows that the tools used—PROMIS and the Glasgow Depression Scale—can serve as valuable support for caregivers, clinicians, and researchers working to identify concerns and guide care.
By helping to flag mental health needs earlier, these tools can inform future treatment planning, support strategies, and individualized care. The more we understand about the emotional and health challenges associated with PWS, the better equipped we are to develop meaningful interventions.
Combining medical treatment with psychological support and structured environments may improve mood, quality of life, and overall health outcomes. Additionally, as drug development for PWS advances, these validated measurement tools may help demonstrate the broader impact of new therapies—especially on mood and life satisfaction.
Want to explore the full findings? You can read the full study here.
