As a parent or caregiver of a child with a blood or bleeding disorder, it’s important to understand that these conditions are complex. Your child needs expert medical care. Good quality care from health care providers specializing in your child’s disorder can help prevent serious complications. You can find such care at a Hemophilia Treatment Center (HTC).
This section of Hemophilia Treatment Centers covers:
What Happens at a Comprehensive Care HTC Visit?
What Are HTCs?
In 1973, a two-year campaign created a nationwide network of hemophilia diagnostic and treatment centers. The goal was to provide a range of comprehensive services for people and families within one treatment center. Today, there are about 141 federally funded treatment centers and programs across the country. Although they are called Hemophilia Treatment Centers, HTCs provide care for people with all bleeding disorders, including von Willebrand disease, ultra-rare factor deficiencies, platelet dysfunctions, and other disorders. HTCs have a team of health care providers from various disciplines who work together to treat your child. Services may slightly differ between HTCs, but most will offer medical management of your child’s disorder, education, and support services needed for your child and your family.
In 2016, NBDF published the NBDF-McMaster University Guideline on Care Models for Hemophilia Management. This evidence-based clinical practice guideline establishes best practices for hemophilia care. The goal is to improve outcomes for people with hemophilia. This care model benefits people with other bleeding disorders as well.
If you want more information about these guidelines, please go to this document on Care Models
A CDC study of 3,000 people with hemophilia showed that those who used an HTC were 40% less likely to die of a hemophilia-releated complication compared to those who did not receive care at a treatment center.1 People who used a treatment center were 40% less likely to be hospitalized for bleeding complications.2
What Is Comprehensive Care?
It all starts with the person who has a blood or bleeding disorder. They are the center of every comprehensive care approach. At an HTC you will find specialists with extensive experience treating bleeding disorders. Hematologists, nurses, physical therapists, social workers, and other health care providers are part of the HTC team.3
Your child will receive a personalized care plan that addresses their unique needs. Treatment plans can have the following:
- Psychological and emotional counseling
- Education
- Support and advocacy with insurance companies
- Home infusion services
- Care coordination with other health care providers
- Collaboration with schools and daycare centers
- Support groups
- Genetic counseling for families
HTCs also help advance research and treatment. Many HTCs participate in research studies and clinical trials. By being involved in studies and trials, HTCs can improve treatment outcomes and quality of life for people with inherited blood or bleeding disorders.
What Happens at a Comprehensive Care HTC Visit?
Your child will have at least one annual comprehensive care visit at their HTC, if not more. During this time, you and your child will meet with many members of the HTC team. The visit can often take several hours. Be sure to prepare to be at the HTC for a while. Each HTC structures their comprehensive care visits slightly differently. The following are often included at a visit4:
Your child will have a medical assessment of their current health. The assessment will determine the right plan of care. This medical evaluation may include a physical examination, blood tests, and imaging studies.
The health care provider will prescribe medications like clotting factor replacement therapy or antifibrinolytics to manage bleeding episodes. They will discuss the details of how and when your child should be given the medications.
The functioning of your child’s musculoskeletal system will be assessed by the physical therapist. This may include measurements of joint range of motion, muscle strength, balance, and coordination. The physical therapist may also assess if your child can do functional activities and meets developmental milestones.
Social workers will meet with you and your child to provide resources to your family.
They can help you not only cope with personal and social issues, but also support you to overcome barriers and improve the quality of life. For example, they might help you navigate your child’s health insurance, so your child gets the medication they need.
You and your child will receive instructions on self-care and managing the disorder. These instructions may include training on giving medication to your child, physical activities, and considerations for schools and daycare. You might be given information on recognizing early signs of bleeding and giving the right treatment.
You and your child may receive emotional support to help your family cope with the emotional and social impact of having a child living with a blood or bleeding disorder. Some HTCs have support groups that you can join. They can also connect you to a mental health care provider or additional resources, as well as provide counseling services if needed.
Many HTCs are involved in research studies and clinical trials. They focus on improving treatment options and quality of life for people with blood or bleeding disorders. You can meet with the research team and discuss their current ongoing studies. You can find out if participating in their studies is right for your family.
Your child will receive regular follow-up care to monitor their blood or bleeding disorder and adjust their treatment plan if needed.
Visiting the HTC
Taking charge of your child’s health and partnering with their HTC team is important when managing your child’s blood or bleeding disorder. However, comprehensive care visits and talking to all your child’s health care providers can often feel overwhelming. The following tips will help you get the most out of your child’s visit to the HTC.
If your child is experiencing specific issues due to their blood or bleeding disorder, make sure to write these down. The more information you can give to your child’s health care provider the easier it will be for them to help.
The following are good items to include in your child’s Healthcare Diary:
- When did your child’s symptoms begin?
- What led to your child’s symptoms?
- Make a note of your child’s energy level. When was it high? When was it low?
- What activities affected their energy levels? Did your child miss any activities because of symptoms or fatigue?
- Are symptoms or fatigue affecting your child’s school or extracurricular activities?
In addition, you want to bring the following items to your child’s HTC visit:
- Your child’s treatment log
- A list of family members with similar symptoms and diagnosed bleeding disorders (if not on file already)
- Your child’s medical records, including X-ray films, test results, or past health care provider’s records (if not on file already)
- Names of prescription and nonprescription medications that your child takes. Include vitamins, herbal remedies, and pain medicines.
- Names of your child’s food or medicine allergies.
- A notepad to write down information. Talk to your child’s health care provider about recording important information about their disorder and its care.
- Some people have found it helps to bring a trusted family member or friend to appointments. That person will help you remember what was said and may ask questions you didn’t think to ask.
The HTC team will need all the essential details about your child’s health and wellness. While revealing personal information is not always comfortable, it is nothing to be ashamed of. Health care providers often hear deeply personal information.
Asking questions is important, especially when you don’t understand something. Otherwise, health care providers will think all their information is clear. You can also ask them to draw a picture to help you understand or provide written instructions. Often HTCs have materials in different formats or languages to help you understand. If you have specific questions or concerns about your child’s blood or bleeding disorder, make sure to include these in the conversation.
Alert the health care team if something might stop you from filling or having your child take a prescribed medication. For example: Is cost a problem? Is it hard for your child to swallow pills? Do injections frighten your child? The HTC team will be able to help you navigate these issues and find a solution that works well for your family.
When arriving home, read over your notes from your child’s HTC visit. If you recorded parts of the visit, listen to the conversations, review treatment instructions, and any other written materials provided by your child’s health care provider.
If you or your child have further questions or concerns, call the HTC, and ask them to put you in touch with an HTC team member who can answer these. If it was recommended for your child to see a specialist or receive a specific test and the appointment was not coordinated by your child’s HTC, make an appointment with the appropriate office.
Most likely the HTC will call you within a few days to inform you of any results of tests performed during your child’s visit. However, call the HTC if you have been waiting a few days for your child’s results.
To find an HTC near you, please go to the CDC HTC directory.
Hemophilia Treatment Center: More Than Just A Treatment Center
Soucie JM, Nuss R, Evatt, B, Abdelhak A, Cowan L, Hill H, Kolakoski M, Wilber N, and the Hemophilia Surveillance System Project Investigators. Mortality among males with hemophilia: relations with source of medical care. Blood 2000; 96:437-442.
Soucie JM, Symons J, Evatt B, Brettler D, Huszti H, Linden J, and the Hemophilia Surveillance System Project Investigators. Home-based factor infusion therapy and hospitalization for bleeding complications among males with hemophilia. Haemophilia 2001; 7:198-206.
Hemophilia Treatment Centers (HTCs) | Hemophilia | NCBDDD | CDC. (2020, January 14). Centers for Disease Control and Prevention. https://www.cdc.gov/ncbddd/hemophilia/htc.html
Centers for Disease Control. (n.d.). Hemophilia Treatment Centers. Retrieved March 13, 2023, from https://www.cdc.gov/ncbddd/hemophilia/documents/205620-A%20HemophiliaBro508.pdf