Can you hear us now? The impact of health-care utilization by rare disease patients in the United States.

ABSTRACT:

Purpose

The vast majority of rare diseases (RDs) are complex, disabling, and life-threatening conditions with a genetic origin. RD patients face significant health challenges and limited treatments, yet the extent of their impact within health care is not well known. One direct method to gauge the disease burden of RDs is their overall cost and utilization within health-care systems.

Methods

The 2016 Healthcare Cost and Utilization Project (HCUP) databases were used to extract health-care utilization data using International Classification of Diseases, Tenth Revision (ICD-10) codes.

Results

Of 35.6 million national hospital weighted discharges in the HCUP Nationwide Inpatient Sample, 32% corresponded to RD-associated ICD-10 codes. Total charges were nearly equal betwe

SUBMITTER: Navarrete-Opazo AA 

PROVIDER: S-EPMC8553605 | biostudies-literature | 2021 Nov

REPOSITORIES: biostudies-literature