Fragile X Syndrome-Associated Emergency Department Visits in the United States, 2006-2011.
Thuy Quynh N Do, Catharine Riley, Pangaja Paramsothy and 3 others
PMID 32058813WHAT IT FOUND
Nearly half of emergency department visits coded for Fragile X syndrome resulted in hospital admission, compared with about one in seven nationally.
This high admission rate suggests these patients often have health issues that standard care has not managed well.
Key findings
01Approximately 45% of ED visits with a Fragile X syndrome diagnosis code resulted in admission to a hospital.
02ED visits among females with Fragile X syndrome were more likely to result in inpatient admissions (51.4%) than those among males (43.8%).
03The study could not determine if the ED visits were related to a Fragile X diagnosis or phenotype because the data cannot distinguish between carriers and those with the full syndrome.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The study used administrative data where the Fragile X code might have been used for carriers or premutations, not just individuals with the full syndrome, so the visits may not all reflect the clinical phenotype of Fragile X. The data counts emergency department visits, not unique patients, so one person visiting multiple times is counted each time. The dataset does not include all states (e.g., Texas) or federal/military hospitals. The study cannot determine if the emergency visit was directly caused by Fragile X syndrome or an unrelated issue in a person who happens to have the diagnosis.
Declared interests
No conflicts of interest or funding sources are explicitly stated in the provided text.
The easy way to misread this
Do not assume these visits were all caused by Fragile X syndrome symptoms. The data includes individuals with the diagnosis code, which can also indicate premutation carrier status, and the study cannot confirm if the emergency reason was related to the syndrome itself.