Health-Related Quality of Life in Adults With Classical Infratentorial Superficial Siderosis: A Cross-sectional Study.

ABSTRACT:

Background and objectives

Infratentorial superficial siderosis (iSS) is a rare but disabling neurological condition characterised by progressive hearing loss, balance and mobility problems. The functional decline in these neurological domains with iSS progression is likely to adversely impact health-related quality of life (HRQoL). We studied HRQoL of adults with iSS using two common generic HRQoL measures (Health Utilities Index Mark III (HUI3) and EuroQoL EQ5D (5 Level) to determine the most impacted domains and evaluate the association between HRQoL scores and disease duration.

Methods

This observational study was an anonymous online survey. Following institutional Research Ethics Committee approval, we contacted dedicated international organisations, charities and patien

SUBMITTER: Kharytaniuk N 

PROVIDER: S-EPMC9651455 | biostudies-literature | 2022 Aug

REPOSITORIES: biostudies-literature