Factor Storage and Use for Hemophilia Treatment
These instructions are for caregivers of Children's Hospital of Philadelphia (CHOP) patients who are prescribed factor for hemophilia management.
Important information:
Your hematologist has ordered factor for your child with hemophilia. Factor replaces the missing clotting factor in the blood and helps the body stop or prevent bleeding. Learn more about hemophilia.
Factor can be used on demand to stop bleeding at the first sign or to prevent bleeds, called prophylaxis.
Your pharmacy label will explain how your factor is to be used. For example, the label may read "dose to be given on Monday" for a prophylaxis dose. The label may read "dose to be given for bleeds" for a demand dose. However, it is very important for you to know the exact dose that your child should get for each treatment. Do not rely on the label alone. Your hemophilia treatment team will review doses with you at each visit and after each bleed. You will need to know how many units are in each vial that you use.
Instructions for factor: storage
Follow the manufacturer's instructions for storing the medicine. This information can also be found on the pharmacy label. Your home care company or dispensing pharmacy will also explain how to store your medicine. It is a very expensive medicine. Follow all instructions carefully to be sure it does not go to waste.
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Note if the instructions state the factor needs to be stored in the refrigerator or at room temperature.
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Store factor in a cool dry place; it will not work if it gets too warm.
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Do not store factor in high temperatures, such as inside a car in the summer.
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Avoid freezing to prevent damaging the vial.
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Once factor is brought to room temperature, do not return it to the refrigerator. Mark the date the factor was removed from the refrigerator. If the factor is not used and it reached room temperature, contact your pharmacy for additional information.
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Factor and supplies should be stored out of the reach of children.
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Store demand doses separately from prophylaxis doses so they are easy to find when you need them.
Reading the label:
Name
The label should have your child's full name and birth date correctly written to identify that the medicine belongs to your child.
International units
Factor is measured in international units (I.U. or units). This is how much factor your child needs to receive.
Note: You may have multiple boxes that make up the total dose. This depends on vial sizes available at the pharmacy. The pharmacy label will list all of the box sizes that make up the dose. Use a calculator and check that you are using the correct total dose and to know the number of international units used for each treatment.
Expiration date
Rotate factor supply so that to use the oldest factor first. Never use factor that is expired.
Note: The international units and expiration date on the pharmacy label should match that information on the box top.
Record keeping
Keep a written record of all infusions. Use a calendar, logbook or a digital record on your phone or computer.
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Record the date, time, dose, and lot number of the infusion. You may be able to remove the label from the factor bottle that has most of this information and place it in your book or calendar.
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If the treatment is for a bleeding episode, record the exact location of the bleed and any details of injury, for example "left knee, fell off bike." Also note who you spoke to from your treatment team about the bleed.
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If the treatment is for prophylaxis, you may write "P" or prophylaxis for that treatment.
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Bring the record book to all of your child's hematology appointments to share this information with your team.
Contact your home care company with any questions about your factor delivery.
Please contact your CHOP hematology team with questions or concerns:
215-590-3535
CHOP Main patients: 8:30am-5:00pm, Monday-Friday 215-590-3437
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Voorhees patients 8:00am-4:30pm, Monday-Friday 856-435-7502
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King of Prussia patients: 8:00am-4:30pm, Monday-Friday 267-425-3320
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Weekends, holidays and every day after 5:00pm, all patients: 215-590-1000, ask the hospital operator for the hematologist on call.
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For non-urgent issues, send your team a message in the MyCHOP portal.
Reviewed on August 1, 2023, by Kelly Monacella, RN, MSN