In this episode, delve into the transformative journey of patient-reported outcomes measures (PROMs) within hemophilia care, exploring their evolution from broad assessments of health-related quality of life to nuanced evaluations of physical ability, functionality, and psychological impact. Learn about pioneering instruments like the Hemo-TEM and the PROBE questionnaire, designed to capture the multifaceted burdens of hemophilia treatment and the patient experience. However, as the landscape of PROMs continues to evolve, discover lingering debates around their sufficiency compared to standardized measures like PROMIS, and the ongoing quest to ensure their responsiveness to change in evaluating novel therapeutics and treatment paradigms. Join us as we unravel the complexities of translating patient-reported clinical outcomes into patient-informed clinical research outcomes.

 

Contributors:

Mark Skinner, JD

Brian O'Mahony

Bradley Rayner

Dawn Rotellini

Mosi Williams, LCSW, MSW, PsyD

 

Senior Advisor: Donna DiMichele, MD

 

Hosted & Written by: Patrick James Lynch

 

Featured Advertiser:

Sanofi

 

Subscribe to the Global Hemophilia Report

 

Show Notes:

Presenting Sponsor: Sanofi

 

Subscribe to the Global Hemophilia Report

 

Connect with the Global Hemophilia Report

Global Hemophilia Report on LinkedIn

Global Hemophilia Report on Twitter

Global Hemophilia Report on Facebook

 

Connect with BloodStream Media:

BloodStreamMedia.com

BloodStream on Facebook 

BloodStream on Twitter