Record-Keeping Tips for the Bleeding Disorders Community

by: Michael Hickey

Keeping an accurate treatment log is an essential part of managing a bleeding disorder. Here’s how you can do it.

People with hemophilia know that it requires effort and diligence to maintain a healthy lifestyle while living with a bleeding disorder. Taking medication, administering factor treatments, and participating in physical therapy are all needed to manage symptoms. But there’s another essential part of managing a bleeding disorder that might be overlooked: record-keeping.

Here is why it’s important to keep accurate records and how you can track treatments easier.

Why You Should Keep Records of Treatment

For one, a treatment log can help support any disability claims you make. When you apply for financial assistance from Social Security, you need to demonstrate clearly how your bleeding disorder affects you. A record of all your factor infusions, bleeding episodes, and lab tests will show just that, helping you build a successful claim. Treatment logs are essential for insurance purposes as well, as many insurance companies now require a treatment log to see whether you are using factor as directed.

A record of bleeds and infusions also keeps you healthy, as it provides important context that your medical provider might need to properly treat you. Logs also make it easy to spot areas of your treatment that should be adjusted, such as a possible change in the amount of factor that you’re using. Plus, you’ll stay on track with treatments and know exactly when to reorder factor and supplies.

As one study concluded: “It appeared those who kept some sort of a log were less

likely to miss scheduled treatments. Additionally, those who use a hemophilia mobile app appeared more likely to remain adherent to treatment.” (Read on for information about apps.)

How to Keep a Treatment Log

Official, printable treatment logs make it easy to record the right information and provide useful detail for you and your health care providers. If you’d rather go digital, there are plenty of options. Several desktop and smartphone applications let you keep and send digital copies of important records, track bleeds, provide context for each bleed, log infusions, and share your health status with health care providers. There are also printable logs specifically for tracking menstrual bleeding.

Of course, you can also record such things in a notebook. The medium and format don’t matter as much as the content of your treatment log.

What to Record in a Treatment Log

Regardless of how you keep your records — whether it’s in a printable log, an app, or a notebook — follow the guidelines below.

If your infusion is in response to a bleed, record:

  • Date and time of the bleed
  • Location and severity of the bleed
  • Time the bleed was treated
  • Treatment used (include the medication brand name, expiration date, lot number, and the number of units administered)
  • Additional steps taken to manage the bleed (for example, pain medication, ice pack, compression bandages)
  • The level of pain on a 0 to 10 scale

If your infusion is not in response to a bleed, record:

  • Date and time of the infusion
  • Treatment used (include the medication brand name, expiration date, lot number, and the number of units administered)
  • The reason for the infusion (for example, scheduled prophylaxis, pre-surgery)

Source: National Hemophilia Foundation, HemAware, October 2022