Hospitalization After Emergency Department Visit Common in Fragile X Patients, Study Finds

Almost half of emergency department visits for fragile X syndrome result in hospitalizations, according to a nationwide study in the U.S.

The finding underscores the importance of surveillance systems capable of identifying and keeping track of fragile X patients as they move through the healthcare system, scientists said.

The study, “Fragile X Syndrome-Associated Emergency Department Visits in the United States, 2006–2011,” was published in the American Journal of Intellectual and Developmental Disabilities.

Knowledge of the healthcare use and expenditures of people with fragile X is necessary to better guide treatment, but information is currently limited.

A group of researchers from the Centers for Disease Control and Prevention (CDC) explored whether visits to the emergency department (ED) would provide insights into health problems that may have been inadequately addressed or managed in fragile X patients. To that end, they analyzed hospital discharge data from the Nationwide Emergency Department Sample (NEDS).

From January 2006 to December 2011, a total of 7,217 ED visits involved a diagnosis of fragile X. Slightly more than one-third (37.4%) involved children 17 or younger.

Overall, having a fragile X diagnosis correlated strongly with a higher rate of hospitalization. While previous research considering the overall patient population found that nearly one in seven ED visits resulted in inpatient admissions to the same hospital, this recent study revealed that 45% of visits had the same outcome among those with fragile X.

Almost one-third of children were admitted (28.2%), while a higher percentage was found in adults (55%). Nineteen (0.3%) patients requiring ED visits died.

Overall, ED visits with a fragile X diagnosis code were predominantly among males (85%), and people with either Medicaid (39.3%) or Medicare (34.8%) as the primary payer.

Notably, males with fragile X appeared six times more likely to visit the ED than females. However, ED visits of females resulted in a higher frequency of inpatient admissions (51.4% vs. 43.8%). This stood in contrast to prior data showing that females in the general patient population were slightly less likely to be admitted than males (14.4% vs. 15.2%).

In particular, females with fragile X were more likely to be admitted as inpatients when the ED visit occurred in either non-metropolitan or non-trauma hospitals.

Males who were admitted as inpatients were more likely to be older than females — mean age 40 vs. 36. The opposite trend emerged when patients were not admitted. Here, females tended to be older, with a mean age of approximately 26, versus 24 for males.

Inpatient admissions were higher among those 65 or older, those who lived in the Northeast, and in patients with a higher income, or with Medicare as primary payer.

Despite some limitations due to reliance on hospital codes to identify cases — not all conditions are recorded by hospital code in a given visit, for instance — the study encompassed a large and nationally representative group of patients, the researchers said.

Taken together, the findings showed that inpatient admission occurred more frequently among fragile X patients than in the general patient population. More research will be needed to identify the factors that underlie such high rates in people with fragile X.

“We found that almost half of ED visits with FXS [fragile X syndrome] diagnosis codes resulted in hospitalizations,” the scientists wrote. “These findings underscore the importance of surveillance systems that could accurately identify individuals with FXS, track healthcare utilization and co-occurring conditions, and monitor quality of care in order to improve care and reduce FXS-associated morbidity,” the concluded.