In this OMedLive video, nurses Brenda Riske and Regina B. Butler discuss “optimizing outcomes in hemophilia treatment” from a nurse’s perspective. Hemophilia, a genetic bleeding disease, affects about 20,000 Americans and over 400,000 people worldwide. A rare and serious condition, it requires a vigilant medical team for optimal patient care.

Brenda Riske, RN, MSN, MBA, MPA from the University of Colorado and Regina B. Butler, RN from Children’s Hospital of Philadelphia offer insight into:

  • the history of hemophilia treatment
  • current treatment options
  • risks and benefits of the options
  • strategies and considerations for different age groups
  • barriers and complications with adherence
  • tips and advice on how to manage those barriers and optimize outcomes

Treatment Options for Hemophilia

Presently, there are two categories for treatment options: episodic and prophylaxis. Episodics are replacement therapies given at the time of the clinically evident bleed, while Prophylaxis treatments are regular intravenous infusions of factor replacement based on patient diagnosis.

Prolonged/extended half-life factor replacement products are one of the highlights for newly approved treatments. Among other benefits, they allow for a decreased frequency of treatments and help improve compliance with the therapy regimen.

Brenda and Regina compare and contrast these treatment options side by side, giving considerable time to their risks and expanding on the three types of prophylaxis types.

Barriers and Strategies

While the specific bleeding phenotype, burden of illness, direct costs, and venous access are all-important barriers to prophylaxis, the discussion focuses on two of the other major factors — adherence and age.

Consideration is given for the very young patient who relies completely on family members and the healthcare team for treatments, as well as special concerns for adolescent and young adult patients who may be resistant to compliance.

Monitoring and Outcomes

Despite careful adherence, there may be times when expected outcomes are not achieved. Risk and Butler address these situations and offer guidance on what can be done from a clinical perspective to help optimize outcomes. Adjusting treatments as indicated by testing can mean increasing dose/frequency of medication, changing the product, and following inhibitor protocols if inhibitors are detected.

Factors such as age, treatment method, and pain are taken into consideration with regard to adherence. When encouraging participation in the plan of care, it has been shown that “a strong relationship with patient/family is [the] foundation for all interventions.”

Best Practices for Hemophilia

The presentation wraps by discussing best practices for optimizing outcomes, and places ‘patient education’ at the top of the list.

When reviewing changes to the plan of care, we are reminded the problem may be the plan itself, and the care team may need to assess for possible changes to the regimen outside of changing doses and frequencies. Venous access, skills, and treatment product options should also be considered.

Watch Brenda Riske, RN, MSN, MBA, MPA and Regina B. Butler, RN discuss these topics for CME credit on OMedLive during their presentation “Nursing Perspectives for Optimizing Outcomes in Hemophilia Treatment.”

Disclaimer: All PlatformQ Health articles, reports, summaries, and recaps of events are for informational purposes. The quotes and opinions of the speakers covered are not to be taken as direct advice for individual patients. Patients should always seek care from qualified, properly accredited healthcare professionals.

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