Quantifying the Diagnostic Odyssey Burden Among Persons with Inborn Errors of Immunity.

ABSTRACT:

Purpose

Patients with inborn errors of immunity (IEI) have lifelong health complications including severe infections and physical impairments. Previous studies show that a patient's perception of their health is an important predictor of health outcomes. The purpose of this study was to understand factors related to patient reported health status.

Methods

We used data from the Immunodeficiency Foundation (IDF) 2017 National Patient Survey and analyzed factors which correlated with the reported health status (RHS). Among a cohort of 1139 self-reported IEI patients, we identified age at the time of diagnosis, time gap between symptom onset and diagnosis, number of physicians seen, and whether the diagnosis was made in the first 5 years of life as significant. We used a two-tai

SUBMITTER: Nikzad S 

PROVIDER: S-EPMC11695393 | biostudies-literature | 2025 Jan

REPOSITORIES: biostudies-literature