Feasibility of Administering the Patient Reported Outcomes, Burdens and Experiences (PROBE) Questionnaire Through the Canadian Bleeding Disorders Registry (CBDR) and Comparison of Data From the Two Sources.

ABSTRACT:

Introduction

The Patient Reported Outcomes, Burdens and Experiences (PROBE) questionnaire can be used to measure quality of life in persons with haemophilia (PWH) and is integrated in the Canadian Bleeding Disorders Registry (CBDR). This offers the opportunity to compare the same data inputted by patients in PROBE and their treating team in CBDR.

Aim

Our objectives were to assess the feasibility of collecting PROBE data through CBDR and to compare the data collected from these two sources.

Methods

We conducted a prospective observational study among PWH using MyCBDR. Participants were invited to digitally complete the PROBE questionnaire at baseline and to repeat it at 6 and 12 months. Additional data were passively collected through CBDR. Data from PROBE and CBDR wer

SUBMITTER: Germini F 

PROVIDER: S-EPMC12612359 | biostudies-literature | 2025 Nov

REPOSITORIES: biostudies-literature