Sleep disturbances and behavioural problems in adults with Prader-Willi syndrome.
Daytime sleepiness is common in adults with Prader-Willi syndrome even when behaviour seems calm—screen everyone, not just the loud clients.
01Research in Context
What this study did
The team sent a short survey to adults with Prader-Willi syndrome. They asked how sleepy the adults felt during the day and how often they woke at night.
They also asked about behaviour problems like tantrums or skin picking.
What they found
One in three adults said they felt very sleepy in the daytime. About one in seven said they woke up a lot at night.
Surprisingly, the adults who slept badly did not show more behaviour problems than the adults who slept well.
How this fits with other research
Cimolin et al. (2011) studied the same PWS adult group in a gait lab. They found clear physical limits, so we know these adults have real body issues even when behaviour looks calm.
Stewart et al. (2018) used the same survey style with Rett syndrome. They linked foot pressure problems to walking loss, showing surveys can spot hidden body-behaviour ties.
Goulardins et al. (2013) asked parents about moving young adults with profound ID to adult doctors. Parents said health needs stay high after age 18, just like the sleep issues found here.
Why it matters
If you serve adults with PWS, do not assume poor sleep equals more outbursts. Screen for sleepiness anyway, because daytime fatigue can hurt learning and health. A quick five-question sleep survey at intake can flag who needs a doctor visit, even when behaviour looks fine.
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02At a glance
03Original abstract
BACKGROUND: Individuals with Prader-Willi syndrome (PWS) are at risk of sleep disturbances, such as excessive daytime sleepiness (EDS) and sleep apnoea, and behavioural problems. Sleep disturbances and their relationship with other variables had not been researched extensively in adults with PWS. METHOD: Sleep disturbances and behavioural problems were investigated in adults with genetically confirmed PWS using standardised questionnaires. Results of adults with paternal deletion (n=45) were compared with those of adults with maternal uniparental disomy (n=33). RESULTS: Eleven adults with PWS (i.e. 15%) had a current sleep problem, mostly night waking problems. Twenty-six adults with PWS (i.e. 33%) suffered from severe EDS. No differences in prevalence of sleep disturbances between genetic subtypes were found. Seventeen adults with deletion (i.e. 38%) and 17 adults with maternal uniparental disomy (i.e. 52%) had behavioural problems. No significant relationships were found between sleep disturbances and behavioural problems. CONCLUSIONS: In adults with PWS, EDS is the most common type of sleep disturbance. Men and individuals with relative high body mass index are at increased risk for EDS. More research, aimed at developing a suitable screening instrument for sleep apnoea in adults with PWS, is necessary. Clinical implications of the findings are discussed.
Journal of intellectual disability research : JIDR, 2010 · doi:10.1111/j.1365-2788.2010.01306.x