Patient-reported data on the severity of Von Willebrand disease.

ABSTRACT:

Introduction

The severity of Von Willebrand disease (VWD) is currently based on laboratory phenotype. However, little is known about the severity of the patient's experience with the disease. The most recent VWD guidelines highlight the need for patient-reported outcomes (PROs) in VWD.

Aim

The study aimed to investigate the patient-perspective on VWD severity and to identify key factors that determine the severity of disease experienced by patients.

Materials and methods

Patients participated in a nationwide cross-sectional study on VWD in the Netherlands (WiN-study). Patients filled in a questionnaire containing questions on the experienced severity of VWD (4-point scale), bleeding score (BS) and quality of life (QoL).

Results

We included 736 patients, median

SUBMITTER: van Kwawegen CB 

PROVIDER: S-EPMC11659499 | biostudies-literature | 2024 Nov

REPOSITORIES: biostudies-literature