Are We Measuring the Right Stuff?

On this episode of the Global Hemophilia Report, we discuss the limitations of current hemophilia care metrics. They explore the importance of measuring the impact on quality of life, the role of nurse-patient relationships, and the challenges faced by underrepresented patient groups, such as those with moderate hemophilia and women. 

 

Guests:

Brittany Savage, NP

Cathy Harrison, RN, Adv Dip, BMedSci, MSc

 

Senior Advisor: Donna DiMichele, MD

 

Hosted & Written by: Patrick James Lynch

 

Featured Advertiser:

Sanofi

 

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Show Notes:

 

#MyHemophiliaTruth. Real stories. Powered by Sanofi. It’s time to consider the whole experience when it comes to managing hemophilia and change the conversation. Explore the full story at www.myhemophiliatruth.com

 

The Bigger Picture in Hemophilia B: 

Hemophilia A and hemophilia B are different bleeding disorders with unique pathologies and clinical features.1 Due to the distinct behavior of factor IX, multiple PK parameters should be considered when assessing bleed prevention. Learn how a broader view of PK may influence evaluation of treatment and management for patients with hemophilia B.2,3 Learn more at thebiggerpictureinhemb.com 

1. Castaman G, Matino D. Haematologica. 2019;104(9):1702-1709.

2. Dolan G, Benson G, Duffy A, et al. Blood Rev. 2018;32(1):52-60. 

3. Mann DM, Stafford KA, Poon M-C, Matino D, Stafford DW. Haemophilia. 2021;27(3):332-339.

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