Care for Severe Bleeding Disorders

The Hemophilia and Bleeding Disorders Program offers comprehensive therapies for children and adolescents with severe bleeding disorders. These disorders can include severe forms of:

• Hemophilia A
• Hemophilia B
• von Willebrand disease
• Other rare factor deficiencies such as Factor VII, X and XIII
• Glanzmann thrombasthenia

Our goal is to provide holistic care so that patients can experience the best quality of life possible and learn how to manage their condition for the rest of their lives.

The care team includes a pediatric hematologist (a doctor who specializes in blood disorders), nurses, social workers and physical therapists. Services for patients with severe bleeding disorders include:

• The Comprehensive Care Clinic
• The HTC Pharmacy Program
• Personalized home treatment plans
• Emergency preparedness
• 24/7 access to an on-call hematologist
• Education and support for every stage of life
• Consults for families whose newborn has been diagnosed with hemophilia or is suspected of having hemophilia
• Immunizations and well-baby care for infants with severe hemophilia

Comprehensive Care Clinic

The Comprehensive Care Clinic is on Monday afternoons at the Cincinnati Children’s Burnet Campus (Location B5). The clinic is a “one-stop” resource for patients with hemophilia or a severe a bleeding disorder.

Your child’s first appointment will include a complete physical exam, lab tests and an appointment with a nurse care manager and a social worker, who will introduce you to helpful resources. After reviewing the results of this initial evaluation, members of the care team talk with you about your child’s condition and medical needs. They will provide your referring physician with a written summary of the evaluation and treatment recommendations.

Your child will return to the clinic every six to 12 months for follow-up care. Patients with special issues, such as frequent joint bleeds, may have more frequent appointments. Children under the age of 1 year are seen more often.

During clinic visits, your child will see our pediatric hematologist, a nurse care manager, a dentist, a physical therapist, a genetic counselor and a social worker. Our team takes a comprehensive approach during clinic visits, offering:

• Routine health evaluations
• Joint health assessments
• Diagnostic testing through our Hemostasis and Thrombosis Laboratory
• Time to answer questions and help patients address concerns such as how to be physically active, how to enjoy certain activities safely and which types of careers are best suited to people with hemophilia

Our team can provide referrals to other specialists as needed. For example, your child may need ongoing physical therapy or early surgical intervention to help prevent joint damage that can occur with severe bleeding disorders.

HTC Pharmacy Program

For more than 25 years, The Hemophilia and Bleeding Disorders Program has received a grant from the federal government that allows the HTC to have a 340B Program. Through this program, the HTC started a pharmacy program for bleeding disorder patients. The money earned from this program goes back to the HTC and helps pay for HTC staff and important services at clinic, including:

• Physical therapy
• Dental exams
• Genetics testing and counseling services

The HTC’s 340B Program is called the HTC Pharmacy Program. This specialized pharmacy program for bleeding disorder patients operates within Cincinnati Children’s Home Care Pharmacy. It provides collaborative, well-coordinated specialty pharmacy services for patients prescribed bleeding disorder medication at home. Pharmacy services include:

• Pediatric-trained pharmacists who understand bleeding disorders (available 24/7)
• Home delivery of infusion-related supplies and factor concentrates
• A variety of bleeding disorder medications and infusion-related supplies
• Locally operated pharmacy with three daily home delivery times (Monday-Friday)
• Cost-effective dose management
• Financial counseling and assistance with filing insurance claims
• Pharmacists who understand hemophilia (available 24/7)
• Knowledgeable and friendly staff who know you and your child
• Home visits from an infusion nurse if you need extra support
• Pediatric home care nurses trained in bleeding disorder care are available

Home Treatment Regimens

Many patients with severe bleeding disorders can receive bleeding disorder medications at home rather than coming to the clinic for each dose. This can reduce the need for hospital visits and allow patients and families to spend more time doing things they enjoy.

If the care team decides that a home treatment regimen is right for you and your family, our team will provide extensive training and support to help you succeed. You will learn how to:

• Give factor replacement therapy at home
• Prevent bleeding episodes and seek early treatment when bleeding episodes occur
• Relieve pain associated with bleeding episodes
• Lower the risk of joint complications and joint damage

The team is available by phone or MyChart to answer questions or any address concerns.

> Download: The Home Treatment of Bleeding Disorders: Learning how to give factor at home

Home treatment is an option for many hemophilia patients, but not all. Some questions the team will consider with you include:

• What type of hemophilia and bleeding patterns does your child have?
• Is your child able to understand and participate in home treatment?
• Does your family have the time and interest to complete the training?
• Can your family commit to a regular treatment schedule and maintain accurate records of infusions and bleeding episodes?

Patients who receive factor at home still need to come to the Comprehensive Care Clinic for their regular checkups.

Emergency Preparedness

We hope your child never faces a medical crisis because of a bleeding disorder. But being prepared for such a crisis can save your child’s life. That’s why we take our commitment to emergency preparedness seriously. We provide:

• A personalized emergency card stating your child’s type of bleeding disorder, its severity, appropriate treatment, factor dosage, allergies and other medical information. We will check this card during every clinic visit to make sure the information is current. Your child should carry this card at all times.
• Medical identification (ID) tags. These are provided through our partnership with the Tri-State Bleeding Disorder Foundation.
• Resources for patients who are traveling. This includes letters that detail your child’s condition, which can help facilitate rapid and appropriate therapy in an emergency. We also can recommend hospitals along the travel route and at your destination.