Why You Need an Infusion and Treatment Log—and What to Put in It

A log helps you to track bleeds, make sure your medication is safe and keep your care team updated on your health

An accurate log of all factor infusions and bleeding episodes is an essential part of successfully managing a bleeding disorder. Up-to-date records help your treatment team tailor care to your individual needs. Insurance companies may require a log for continued coverage of factor, and a log may help support disability claims. And if there’s a recall of factor or another issue with your medication, the only way to know if you’re affected is if you have a record of your medicines.

 

What to include in a treatment log
A log can be as simple as a notebook, although now there are web and mobile apps that aim to simplify record keeping (see “Treatment log options” below). Because you’ll want to share this information easily with your hemophilia treatment center (HTC), it’s a good idea to check with the care team before committing to a format. But no matter the tracking method you use, make sure your log includes the following:

 

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

  • Date and time of bleed
  • Location and severity of bleed
  • Time 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)

 

Treatment log options
There are many choices for keeping a treatment log. As mentioned above, logging by hand in a notepad is sufficient. Your HTC or pharmacy may have a printable template you can fill in and copy such as this one from the specialty pharmacy HF Healthcare. Alternatively, you could set up an infusion log on your computer using a word processing or spreadsheet application.

For many, however, web and mobile apps that track bleeds and infusions are most convenient. A couple of options to try include:

 

ATHNadvoy
ATHNadvoy is operated by the American Thrombosis and Hemostasis Network (ATHN). In addition to tracking infusions and bleeds, the web-based tool and mobile app allows you to transmit your treatment information to your HTC, where it can be added to your records.

MicroHealth
Track bleeds and infusions and get text reminders about prophylaxis. Integration between the mobile app and website ensures your data is up to date. Share your health information with your care team and members of your wider support network.

In addition to the two independent apps above, the following tracking apps were created by pharmaceutical companies:

 

Beat Bleeds by Shire
Apple
Android

HemMobile by Pfizer
Apple
Android

HemaGo by Novo Nordisk
hemago.com
Apple
Android

HemoTrax by CSL Behring
Apple
Android