Updated NHF Guidelines Aim to Improve Emergency Care

Revised guidelines help ensure all people with bleeding disorders get prompt and appropriate medical treatment in the emergency department
Author: Denise Schipani | Illustration by Alessandro Gottardo

In September 2017, the National Hemophilia Foundation’s Medical and Scientific Advisory Council (MASAC) adopted updated guidelines for the treatment of people with bleeding disorders in hospital emergency departments (EDs).

The original guidelines were developed after Hurricane Katrina devastated New Orleans in 2005. Many residents ended up relocating to Houston—and some of those people had bleeding disorders. “It was a scramble for the Houston treatment center to get information from the director of the New Orleans treatment center about these patients,” says Marion Koerper, MD, a current member and former vice chair of MASAC and professor emerita of pediatric hematology at University of California, San Francisco School of Medicine. People who were displaced didn’t have their prescriptions for clotting factor, much less detailed medical records.

 

Emergency treatment guidelines

After Katrina, Koerper set out to draft guidelines that would help ED doctors, nurses and other staff understand and treat people with a range of bleeding disorders. Once MASAC approved the document, it was reviewed and approved by the National Hemophilia Foundation (NHF) Board of Directors and posted on the NHF website.

So why update the ED guidelines now? Because, as Koerper explains, a lot has changed over the years in terms of types of clotting factor and advances in treatment. The recommendations were also reordered so the most relevant and urgent information is at the top. Triage was the most crucial aspect of the guidelines to get across to ED staff, says Koerper. “We had that lower down in the document in the earlier version, and it should really be stated up front that a person with a bleeding disorder who comes into an ED should be triaged for immediate care—not wait for hours and not have to undergo scans and tests before being given factor,” she says.

 

Being prepared for an ED visit

Anyone can end up in the emergency room after an accident, and that’s when the guidelines can come in handy—or save a life. The more medical professionals are exposed to the guidelines, the more they understand appropriate management of bleeding disorders.

People with bleeding disorders and their families should also know the updated information so they can correctly communicate to unfamiliar medical staff, says Mary Lesh, RN, MS, CPNP, a hematology nurse practitioner at the University of California Benioff Children’s Hospital in San Francisco. Lesh says she and others like her are available to help.

“When patients come to the HTC for annual visits or other appointments, we make sure they know how to contact a 24-hour hematologist,” says Lesh. “We explain that we want them to call us if they’re going to an ED. Or we may even try to identify which ED a patient would be likely to visit in an emergency and reach out to them in advance.”


What’s in the Guidelines?

The most important features of the original emergency room guidelines remain. It’s the emphasis that’s shifted. Here are the top points:

Triage: A patient with a bleed needs to be treated with factor immediately. To emergency department (ED) staff unfamiliar with bleeding disorders, however, a bleed isn’t always obvious. “A lot of ED personnel think bleeding means they can see blood. They may not understand that it may be internal,” says Marion Koerper, MD, a member of National Hemophilia Foundation’s Medical and Scientific Advisory Council. This can lead to dangerous wait times for the patient. If possible, ED staff should consult with the patient’s hematologist or a hemophilia treatment center.

Assessment: Though it’s normal for ED staff to do a physical exam and take a clinical history to make a diagnosis and determine treatment, people with bleeding disorders should be treated based solely on clinical history or a suspicion of a bleed—before waiting for test results.

Diagnostic testing: Factor should be administered before any diagnostic tests, such as X-rays or CAT scans. This is especially critical in the case of head trauma, where intracranial bleeding can be fatal. And if any invasive tests are necessary (such as a lumbar puncture), the patient should always have factor therapy first.

Read the full MASAC recommendation, “Guidelines for Emergency Department Management of Individuals with Hemophilia and Other Bleeding Disorders