Why Keep an Infusion Log

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You’re in a hurry. You have a bleed that you treated yesterday and you are supposed to treat again this morning before going to work. So you hurriedly perform the venipuncture and dispose of the syringe and bottles. Do you record it in your infusion log? Not now. You’re already running late.

You need to get breakfast on the table, lunches packed, dress for work, and get the children off to school. Oh, and by the way, you need to infuse your son because you know that early morning is the most effective time for a factor infusion. Do you have a few more minutes to record the infusion? Maybe, but not always.

Granted, with peel-off labels, factor manufacturers make it more convenient to record infusions but most of the time it’s easier just to toss the empty boxes or lids in a drawer and plan to record it when you get home. But will there be more time when you get home? And will you remember?

Keeping a log is no different than keeping a diary. It’s a matter of discipline and commitment in the beginning, and then it becomes a part of your routine - like brushing your teeth or reading the paper. The question you need to ask yourself is, “are you keeping a log because your treatment center says you must, or are you keeping it for yourself?” Think about it. A log tells a story. That story provides better opportunities for good care.

Keeping a log provides valuable information, such as when and how much factor was infused, the purpose of the infusion, the site of the infusion, and the outcome. Why is this important? Consider the following stories, keeping in mind that, while beneficial for these two families, it might not be the answer in every case.

Story 1: A young child on prophylaxis is infusing three times a week and frequently bleeds 12 hours before his next scheduled dose. The parents keep a detailed record and take it in to the physician. After careful review, the physician determines that he wants to make a change in the treatment plan. Instead of infusing 30 units per kilogram (u/kg) three times a week, he decides to try 20u/kg every other day. The child weighs 20 kg. So the child was originally prescribed 30u/kg. That’s 30 units times 20 kg, or 600 units of factor per dose. At 12 doses per month (3 times a week), the child was infusing 7200 units per month. Then the doctor changed the prescription to 20u/kg every other day. That’s 20 units times 20 kg, or 400 units of factor per dose. At 15 doses per month (every other day), the child is now infusing 6000 units per month instead of 7200. In this particular example, the family benefits from a reduction in the amount of factor it uses, even though there is an increased frequency of infusions. But more importantly, this treatment plan has corrected the problem of bleeding between infusions and has reduced the risk of damage to the joint that had been experiencing the bleeding.

Story 2: A child with moderate hemophilia is seen yearly at a comprehensive hemophilia treatment center, but is treated (infused) elsewhere. For the child’s annual visit to the treatment center, his mother brings in a detailed list of infusion dates from the child’s infusion log. This list clearly explains to the treatment center staff why a child with moderate hemophilia has developed stage-2 joint damage to his ankle since he was last seen. The infusion log cannot turn back the clock and erase the joint damage, but it is the basis for the development of a therapy plan that will attempt to prevent this from occurring in the future, as well as preventing further damage to the affected joint.

These are just two examples of how documentation can help promote better outcomes for you or your child. Keep infusion logs handy (e.g., in a notebook, on a clipboard, or in a drawer) and contact your home care provider for extra copies. Make time in your routine to fill them out. Chances are you’ll be glad you did. By reading your story, you and your healthcare team are more likely to make better decisions about your care.