Contemporary Demographic, Treatment, and Geographic Distribution Patterns for Disorders of Sex Development

Area of Science:

• Pediatric Surgery
• Endocrinology
• Genetics

Background:

• Disorders of Sex Development (DSD) encompass a range of conditions affecting sexual development.
• Understanding surgical management patterns and healthcare utilization is crucial for optimizing care in DSD patients.
• Previous research has not comprehensively detailed national trends in inpatient surgical interventions for pediatric DSD.

Purpose of the Study:

• To characterize demographic factors, hospital use, and surgical management patterns for pediatric patients with DSD.
• To investigate state and regional variations in DSD surgery rates.
• To analyze the association between surgical status and healthcare costs and length of stay.

Main Methods:

• Analysis of the Nationwide Inpatient Sample (NIS) database from 2001 to 2012.
• Inclusion of patients younger than 21 years with International Classification of Diseases, Ninth Revision (ICD-9) codes for DSD-related diagnoses and procedures.
• Identification of inpatient surgical admissions and comparison with nonsurgical admissions.

Main Results:

• A total of 43,968 DSD-related admissions were identified; 73.4% were female.
• Only 642 (1.9%) admissions involved inpatient surgery, with less than 1% of neonates undergoing genital surgery.
• Nonsurgical admissions were linked to longer hospital stays and higher costs.
• No significant regional variation in DSD surgery rates was found, but surgeries clustered in states with tertiary referral centers.

Conclusions:

• Inpatient surgical management for pediatric DSD is infrequent, particularly in neonates.
• Nonsurgical DSD admissions incur greater healthcare resource utilization.
• While overall regional variation is minimal, specialized centers manage a higher volume of DSD surgeries.