Understanding activity participation among individuals with Wolfram Syndrome.

ABSTRACT:

Introduction

Wolfram Syndrome (WFS) is a rare genetic disease associated with a variety of progressive metabolic and neurologic impairments. Previous research has focused on WFS-related impairments and biomarkers for disease progression; however, information about how WFS impacts participation in daily activities is lacking.

Methods

WFS (n=45; 20 children, 25 adults) participants completed an online questionnaire about activity participation. Thirty-six non-WFS comparison participants (11 children; 25 adults) completed a portion of the questionnaire. Symptom data from a subset of WFS participants (n=20) were also examined in relation to participation data.

Results

WFS children and adults had lower participation than non-WFS children and adults in almost all activity d

SUBMITTER: Bumpus E 

PROVIDER: S-EPMC5983031 | biostudies-literature | 2018 Jun

REPOSITORIES: biostudies-literature