Routine healthcare visits are being held up because of the pandemic, so many parents are missing their children’s annual hemophilia treatment center (HTC) visit. However, these annual checks are vital for parents of children with bleeding disorders: They are a time to identify the right treatment program for a child, discuss important health developments, ask questions, and learn more about healthcare options.
What can parents do in this situation? There are still options available to members of the bleeding disorders community and their families, even when in-person visits are disrupted or unavailable.
Contact Your HTC
First, call your HTC to see if providers are holding regular in-person clinic visits and if you can reschedule at this time. For more information about access to care, or if you have questions about COVID-19 and its effect on those with bleeding disorders, email NHF at [email protected]
Leverage Telehealth Services
Many healthcare providers and HTCs are offering virtual visits in lieu of in-person appointments. Take advantage of telehealth services available to you—specifically telemedicine, which refers to remote clinical services such as virtual appointments. Telemedicine allows patients and medical professionals to communicate with each other in real time through videoconference, which can substitute for an in-person annual evaluation.
Virtual visits provide clear benefits during the pandemic: They can be done anywhere, they don’t require travel, and you maintain social distance from doctors and other patients.
A telemedicine visit will require access to a device with videoconferencing software, an internet connection and an email address so that your provider can contact you with videoconferencing links and other resources.
Similar to an in-person visit, virtual appointments can include a limited physical exam, this time with patients doing some of the work, including self-weighing, taking their own temperature, and sending pictures of wounds or injuries. Virtual visits will likely also include a medication review and questions about the patient’s current treatment program.
“Patients who have used telemedicine have often expressed to me, ‘My goodness, how easy it is to do this,’” says Roshni Kulkarni, MD, director of the Center for Bleeding and Clotting Disorders at Michigan State University, in a presentation conducted by NHF.
Due to the COVID-19 pandemic, Medicare is covering the use of telehealth services by doctors and other healthcare providers to treat patients from offices, hospitals and places of residence (such as homes, nursing homes and assisted living facilities). Contact your own healthcare provider to see what telehealth services he or she offers.
How to Prepare for a Telemedicine Appointment
It will help to treat remote appointments like in-person appointments and prepare as you normally would. To get the most out of your virtual visit:
- Prepare a series of questions before the appointment so you know what to cover.
- Have a log or calendar of your child’s bleeding episodes on hand. This important information lets healthcare providers assess your child’s treatment plan and make changes if necessary.
- Have relevant medical records ready—including test results and past medical records.
- Provide the names of prescription and nonprescription medications your child takes, along with names of medications and foods to which your child is allergic.
Learn More About Home Care
Scheduling medical appointments has become more complicated, which means home care can be even more useful to children with bleeding disorders. Parents can access educational resources to learn how to perform important tasks themselves, such as identifying serious injuries or administering factor injections.