Lifelong CAH hospitalisation burden revealed

medwireNews: Patients with congenital adrenal hyperplasia (CAH) are significantly more likely to be admitted to hospital and experience severe in-hospital outcomes than people without the condition, especially during the first years of life, highlight Swiss researchers.

“These findings support the need for heightened awareness and age-specific management strategies,” say Livia Hafner (Cantonal Hospital Aarau) and co-authors in The Journal of Clinical Endocrinology & Metabolism.

Their population-based cohort study collated hospital admissions data from 2011 to 2022, with 2020 of the 12,569,835 hospitalisations over this period occurring in people with CAH. This included 147 hospitalisations in neonates and infants, 137 in children aged 1–4 years, 218 in those aged 5–19 years and 1518 in adults.

Over the same period, the control group had 209,890 admissions for neonates and infants, 200,830 for young children, 606,483 for older children and adolescents, and 11,550,612 for adults.

The researchers note that the average age at hospitalisation was 41.8 years in the CAH group versus 53.7 years in the general population, with paediatric hospitalisations accounting for 24.9% and 8.1% of admissions in the cohorts, respectively.

This increased healthcare use among the younger age groups may result from “[p]arental uncertainty regarding medication adherence, emergency preparedness, and implementation of sick day rules during the first year of life,” the authors suggest.

After propensity-score matching for sex, nationality, emergency versus elective admission, and insurance status, people with CAH were more likely to have comorbidities than those without CAH, including diabetes, osteoporosis, adrenal tumours and epilepsy or seizures.

Endocrine and metabolic disorders were the most common causes of hospital admission among people with CAH, particularly among the younger age groups, with neonates and infants a significant 66.5 times more likely to be admitted to hospital with these conditions than controls. This significantly increased risk persisted during age 1–4 years (odds ratio [OR]=21.42), 5–19 years (OR=53.32) and adulthood (OR=2.61).

People with CAH were also more likely than those without to be admitted to hospital for infectious diseases, and genitourinary, psychiatric and neurological disorders. Hafner et al note that these trends likely reflect the increased susceptibility to adrenal crisis during acute infections, such as respiratory viruses and gastroenteritis.

In addition, before matching, girls and women accounted for 61.3% of hospitalisations among the CAH patients versus 53.7% of controls, a difference the team partly attributes to their need for genital reconstruction and urological surgery.  

“Throughout the lifespan, individuals with CAH consistently exhibited a higher mean number of diagnoses per hospitalization than the unmatched control group,” the authors report, with an average of 5.5 diagnoses per hospitalisation in infancy among the CAH group, which they point out is “a burden reached in the control group only around age 60.”

Hafner et al also found that hospitalisation outcomes tended to be more severe among people with CAH than matched controls at all age groups, with an overall longer duration of stay (4 vs 3 days), higher rates of mechanical ventilation (3.6 vs 2.3%), and an increased likelihood of admission to an intensive care unit (ICU; 16.4 vs 11.2%).

The team observes that while ICU admissions were not significantly more likely before the age of 5 years in patients with CAH than matched controls, neonates and infants with CAH were significantly more likely to receive mechanical ventilation (OR=2.8), and had longer median durations of stay in hospital (4 vs 2 days) and ICU (1.6 vs 0.1 days), “indicating that early life largely accounted for the excess resource use” among CAH patients.

The authors conclude: “Although in-hospital mortality was not increased, the consistently higher resource use underscores the need for proactive, coordinated care across the lifespan.”

And they therefore suggest: “Strengthened caregiver education, optimized emergency management, and structured transition to adult services may help reduce preventable admissions, while future studies integrating clinical severity and treatment data are needed to identify modifiable drivers of hospital utilization in CAH.”

By Lynda Williams

medwireNews is an independent medical news service provided by Springer Healthcare Ltd. © 2026 Springer Healthcare Ltd, part of Springer Nature

Citation(s)
J Clin Endocrinol Metab 2026; doi:10.1210/clinem/dgag368
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