Inpatient hospitalisations for patients with Prader-Willi syndrome: a 2019-2021 National Inpatient Sample analysis.
Adults with Prader-Willi syndrome stay two days longer in hospital and face almost double the death rate, so screen them fast for infection, breathing issues, and obesity on admission.
01Research in Context
What this study did
Researchers looked at three years of national hospital data. They compared adults with Prader-Willi syndrome to similar adults without the syndrome.
They wanted to see if PWS leads to longer stays, more deaths, or extra health problems during a hospital visit.
What they found
PWS patients stayed in the hospital two days longer. They also died nearly twice as often as the matched group.
Infections, breathing trouble, and severe obesity showed up more often in the PWS group.
How this fits with other research
Capodaglio et al. (2011) and Galli et al. (2011) already showed that PWS adults have poor balance and weak muscles. The new hospital data fit that picture: weaker bodies appear to struggle more when illness hits.
Farley et al. (2022) used the same matching method on kids with intellectual disability. Those children also had more overnight stays, so the PWS finding extends a pattern seen across developmental disabilities.
Austin et al. (2015) warned that rigid routines can spark big meltdowns in PWS. Longer hospital stays may expose patients to lots of schedule changes, so behavior plans should be ready.
Why it matters
If you work with adults who have PWS, flag any admission early. Ask the medical team to screen for infection, check breathing, and manage weight at the start. Build in flexibility so meal or med delays do not trigger severe behavior. These steps can shorten stays and save lives.
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02At a glance
03Original abstract
BACKGROUND: Prader-Willi syndrome (PWS) is a genetic disorder characterised by hyperphagia, intellectual disability and increased propensity to a range of medical disorders. To better characterise the clinical presentation of PWS across the lifespan, this study reports on the demographics and clinical diagnosis of individuals with PWS hospitalised in the United States. METHODS: The National Inpatient Sample, an all-payor administrative claims database of hospitalisations in the United States, was queried for patients with a coded diagnosis of PWS from October 2019 through December 2021. Hospitalisations for patients with PWS were matched to five non-PWS hospitalisations based on age, sex, year and hospital characteristics. RESULTS: There were 4400 (95% CI: 3,885 to 4,915) PWS hospitalisations, with a median age of 24. Compared to controls, PWS hospitalisations had longer hospital stays (median 5 vs. 3 days) and higher in-hospital mortality (2.2% vs. 1.3%). Infectious (19.0%) and respiratory (16.2%) diagnoses were most common for PWS patients. Codes for overweight or obesity were present in 38.1% of PWS hospitalisations, with Hispanic ethnicity was associated with a higher odds of overweight/obesity in PWS patients (aOR 1.73; 95% CI: 1.11-2.71). CONCLUSIONS: PWS hospitalisations are characterised by higher healthcare utilisation and complexity compared to matched controls. The high prevalence of obesity and significant rates of infectious and respiratory conditions highlight specific health challenges for PWS patients. Validation of the Q87.11 administrative claims code is an essential step for ongoing health services research in this condition.
Journal of intellectual disability research : JIDR, 2025 · doi:10.1111/jir.13194