PEN 05.13

Inhibitor Insights

Jo Schaffel 

If you live with inhibitors, you know how complicated life can be. You or your child may be on several different medications and have a demanding treatment regimen. You may have several appointments a week at your hemophilia treatment center (HTC). On top of that, you have all the other responsibilities of parenthood.

            The mobile apps profiled in this issue of PEN are designed to help organize your life and make it easier to track doctor appointments, treatments, bleeds, and medications. How well do they work if someone in your family has an inhibitor?

Benefits of Mobile Apps

For years, many parents, caregivers, and patients have tracked factor usage and bleeds on computer spreadsheets or with pencil in a paper logbook. These methods work well for many people, but they have limitations. Mobile apps are a more convenient method for keeping track of bleed data. These software applications are designed to run on smartphones, tablet computers, and other mobile devices.

            The benefits? Tech-savvy teens and young adults (who often seem to be attached to their cell phones) might prefer to use apps to track their info rather than fill out an entry in a logbook or use a computer. Plus, data on bleeds stored electronically is easier to transmit to a doctor quickly in an emergency.

            Some health insurance companies require detailed information about infusions: time, date, brand, lot number, bleed type, and dosage. A mobile app can help you keep track of all this info and make it easier to share with caregivers. And if you’re away from home, it’s easier to enter or scan product data and bleed info into a mobile app than use a logbook or spreadsheet. Some apps also allow you to set reminders for appointments or treatments as well as record factor usage. Newer apps allow a user to track not only factor usage, but every aspect of living with a bleeding disorder.

            Several apps allow users to set up multiple patient profiles—a benefit for parents and caregivers. And this way, older kids can take part in their own care and enter their bleed and treatment info on their own.

Will an App Work for You?

Novo Nordisk’s HemaGo app was designed to be especially helpful for patients with inhibitors, according to the company’s press release. It was developed to improve communication between hemophilia patients and their caregivers. Because treatment for inhibitors can be so complicated, the app makes it easier to keep track of all the details.

            The HemaGo app allows users to record information on all medications that patients are using, including over-the-counter meds. This gives doctors a better overall picture of the patient, which can help prevent possible negative interactions. HemaGo can also record how much factor is used and the reason for each infusion.

            Another useful feature of HemaGo is that it lets you record other data about a bleeding episode besides just the basics. What was the level of pain? How did the bleed affect work, school, or daily life? Where was the bleed, and how long did it last? This info is valuable for evaluating treatment regimens.

            The data that you enter into the HemaGo app syncs with Novo Nordisk’s website, called Changing Possibilities in Hemophilia,1 and can be shared with doctors or healthcare teams. You can use the app to create customized reports through Changing Possibilities, and then print out or email the reports to your healthcare team. HemaGo also allows you to set up reminders on your phone for appointments or treatments, or log prophylactic treatments.

            MicroHealth offers another way to track bleed data electronically: a cloud-based program (see page 7). It’s not exactly an app, because people without smartphones can use it. You set up a customized profile online, and then specify who receives the information you send—this gives you control of your personal health data. The program sends you text messages asking questions such as whether you’ve infused or had a bleed. The answers you text back go into your profile and can be reported to your healthcare team.

            Liz, whose three year-old son has severe hemophilia A with inhibitors, is an enthusiastic user of MicroHealth. “Between ITI and later, prophy, we were doing three infusions a day,” Liz explains. “I reached out to the MicroHealth team to help me set it up that way. They actually enhanced MicroHealth to fit my schedule perfectly.” Liz set up her profile online, and now just texts MicroHealth if she needs to record anything. “They remind me to log when the next dose is due. That’s an awesome feature.” She no longer uses paper and pencil for logging. And she is teaching her son how to use the program.

            If you do decide to use an app or online program to keep records, be cautious. As with any digital or electronic information-sharing tool, you need to be careful about your personal information. Check the company’s privacy policy to see which information it collects and how secure your data will be.2

            Mobile apps can help families with inhibitors organize and keep track of every aspect of a treatment plan, especially if several caretakers are involved or if you are on a complicated treatment regimen. Whether you are at school, work, or your HTC, your treatment data is at your fingertips. Having an inhibitor adds to the stress of having hemophilia and complicates daily living, but you may be able to reduce stress by using an appropriate app.

1. The company’s website states that Novo Nordisk does not have access to patient-specific information. The company’s access is restricted to generic information (“de-identified”) in which the data has been stripped so that the individual source cannot be identified, in accordance with Health Insurance Portability and Accountability Act of 1996 (HIPAA) Privacy and Security Rules. For info:


2. For more on privacy, see “Private Parts: Is Your Personal Health Information Exposed?” PEN, Feb. 2012.
Information Provided by LA Kelly Communications