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
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