Improving Hemophilia A Care and Patient Adherence: Planning Prophylaxis to Meet Individual Patients’ Needs
Courtney Thornburg, MD, MS
Professor of Clinical Pediatrics
Division of Hematology-Oncology
UC San Diego School of Medicine
Medical Director, Hemophilia and Thrombosis Treatment Center
Rady Children’s Hospital San Diego
San Diego, CA
Guy Young, MD
Professor of Pediatrics
Division of Hematology, Oncology and Bone Marrow Transplantation
USC Keck School of Medicine
Director, Hemostasis and Thrombosis Center
Children’s Hospital Los Angeles
Los Angeles, CA
Erin Mooney, MS
Clinical Content Manager
Rebecca L. Julian, MS, ELS
Senior Manager, Editorial
Kathryn Schaefer, MSN, RN, CPHRM
Senior Manager, Accreditation and Compliance
East Lansing, MI
Upon completion, participants should be able to:
- Outline clinical evidence on the risks and benefits of available prophylactic strategies in the individualized management of hemophilia A
- Apply core principles of shared decision making to engage patients with hemophilia A and/or their caregivers
This activity is intended for hematologists, pediatric hematologists, and nurses specializing in hematology.
Statement of Need
Recent treatment advances have transformed the care of hemophilia A, a congenital, X-linked bleeding disorder caused by coagulation factor VIII deficiency. However, only 60% of adults with this condition are adherent to prophylactic therapy, and patient-reported adherence in adolescents can be as low as 30%. The prophylaxis schedule associated with factor VIII replacement therapy is burdensome to patients due to its short half-life, but extended half-life agents that require fewer injections per week help reduce this burden. However, these agents are recombinant factor VIII and carry a higher risk of patients developing inhibitors. Fortunately, several novel therapeutic approaches have entered the market that either mimic factor VIII or reduce the function of anticoagulants. These advances in therapy have provided the opportunity for hematologists to individualize the prophylactic treatment of hemophilia A but have also increased the complexity of treatment decision making. In light of the expanding hemophilia A treatment landscape and ongoing challenges to treatment adherence, incorporating patient preferences into the decision-making process is central to improving outcomes. Strategies for shared decision making provide an excellent approach for clinicians to deliver relevant and interpretable information to patients and receive well-considered patient preferences. The use of shared decision making and inclusion of newer agents in prophylaxis treatment strategies for appropriate patients will help improve adherence to therapy and long-term hemophilia A–related outcomes..
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This CME/CE activity consists of a 0.5-credit presentation points. To receive credit, read the introductory CME/CE material, read the presentation points, and complete the evaluation, attestation, and post-test, answering at least 70% of the post-test questions correctly.
Initial Release Date: December 5, 2019
Expiration Date: December 4, 2020
Estimated Time to Complete This Activity: 30 minutes
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Courtney Thornburg, MD, MS
Consulting fees/advisory boards: Bioverativ, Bluebird Bio, Ironwood Pharmaceuticals, Inc., Spark Therapeutics
Fees received for promotional/non-CME activities: Genentech
Contracted research: Bayer HealthCare Pharmaceuticals, Novo Nordisk, Octapharma, Sanofi Genzyme
Guy Young, MD
Consulting fees/advisory boards: CSL Behring, F. Hoffman-La Roche Ltd., Genentech, Grifols, Kedrion, Novo Nordisk, Spark Therapeutics, Takeda Pharmaceuticals North America, Inc., uniQure
Fees received for promotional/non-CME activities: Bioverativ, CSL Behring, F. Hoffman-La Roche Ltd., Grifols, Novo Nordisk, Sanofi Genzyme, Spark Therapeutics, uniQure
Contracted research: Genentech
The peer reviewers and activity planners have no financial relationships to disclose.
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This activity is supported by an educational grant from Genentech.
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