A profile of mental health and behaviour in Prader-Willi syndrome.
Over half of people with Prader-Willi syndrome in Ireland carry a psychiatric diagnosis and wait two years for psychology care.
01Research in Context
What this study did
S-Heald et al. (2020) mailed caregiver surveys across Ireland. They asked about mental-health diagnoses, problem behaviors, and wait times for psychology visits.
The team wanted a snapshot of how Prader-Willi syndrome affects behavior and service use.
What they found
More than half of the respondents said their child had a diagnosed psychiatric condition. Anxiety topped the list.
Skin-picking, repeated questions, trouble with change, non-compliance, and food-seeking were also common. Families waited almost two years on average to see a psychologist.
How this fits with other research
de Leeuw et al. (2024) ran a larger, newer survey in Spain and found even higher rates of behavior trouble and psychotropic drug use. Their numbers update and widen the Irish picture.
Fullana et al. (2007) first showed that psychopathology in PWS goes beyond what you would expect from low IQ alone. The 2020 data confirm this in a whole-country sample.
Manning et al. (2026) stretched the lens worldwide and found the same long waits and heavy caregiver distress. Together these studies say the service gap is global, not just Irish.
Why it matters
If you serve clients with Prader-Willi syndrome, plan for anxiety, rituals, and food-seeking from day one. Screen for psychiatric diagnoses early and track wait times. Share these facts with funders to push for faster psychology referrals and broader caregiver support.
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02At a glance
03Original abstract
BACKGROUND: Prader-Willi syndrome (PWS) is a neurogenetic syndrome with an associated behavioural phenotype and a high incidence of behaviours of concern and psychiatric co-morbidity. These associated behaviours and co-morbidities are not well addressed by existing interventions, and they impact significantly on affected individuals and their caregivers. METHODS: We undertook a national survey of the needs of individuals with PWS and their families in Ireland. In this paper, we report on the parent/caregiver-reported mental health, behavioural and access to services. RESULTS: Over 50% of individuals with PWS in this survey had at least one reported psychiatric diagnosis, the most common diagnosis was anxiety. The most commonly reported behaviours in children were skin picking, repetitive questioning, difficulty transitioning and non-compliance. The same four behaviours were reported by caregivers as being the most commonly occurring in adolescents and adults in addition to food-seeking behaviours. Increased needs for mental health services were also reported by caregivers. Individuals with PWS had an average wait of 22 months for an appointment with a psychologist and 4 months for an appointment with a psychiatrist. CONCLUSION: This study highlighted high levels of psychiatric co-morbidities and behavioural concerns in individuals with PWS in Ireland. The findings of this study suggest that there is an urgent need to provide specialist psychiatric and behavioural interventions to manage complex mental health and behavioural needs to better support individuals with PWS and reduce caregiver burden.
Journal of intellectual disability research : JIDR, 2020 · doi:10.1111/jir.12707