Preparing for an HTC Visit

Preparing for an HTC Visit

Preparing for an HTC Visit

Tips compiled by NEHA’s Mental Health Task Force

Posted: April 25, 2025. Originally published in our Spring 2025 Newsletter. 

 

Hemophilia Treatment Centers (HTCs) are specialized centers that bring together a team of health professionals, like Hematologists, Dentists, Physical Therapists, Psychologists, Social Workers and others, who are experienced in treating people with bleeding disorders.

HTCs provide access to multidisciplinary health care professionals with comprehensive care, meaning their medical team of experts can guide you and connect the dots of your various care needs. While they can help with your specific bleeding disorder related needs, they often also have social workers and psychologists to help with your mental health needs as well.

It is recommended that patients with bleeding disorders attend a yearly visit with their HTC. As you prepare for your annual visit, it is important to show up prepared. The following information was compiled by medical professionals on our Mental Health Task Force, to help you get prepared for your next visit.

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Items To Bring To Your Next HTC Visit

  • Medical Records: Bring any relevant medical records, documents, or a medical journal you maintain.
  • Medication List: Include a list of your current medications and their dosages.
  • Update on Medical Changes: Inform your treatment team of any new medical developments since your last visit.
  • Discussion Topics: Make a list of issues, concerns or questions you (or your child) want to discuss to ensure nothing is overlooked. If desired, request written copies of any information or instructions to take home with you.
  • Comfort Items: Bring items to provide comfort or distraction for yourself or your child. These can sometimes be long days, so bring items to stay busy.
  • Relaxation Techniques: Practice relaxation strategies, such as deep breathing, to help manage anxiety or nervousness.
  • Prepare Your Child (If Applicable):
    • Talk to your child beforehand about the visit. Ask if they have any questions or concerns.
    • Encourage adolescents to have one-on-one time with providers.
    • Explain what will happen during the visit, especially if procedures like blood draws (peripheral or port access) are expected.
    • Support your adolescent in leading the conversation and answering initial questions themselves.

Common Questions and Themes to Discuss With Your HTC Treatment Team

Infants and Early Childhood (Ages 0–5)

  • Questions about the initial diagnosis.
  • Choosing a treatment plan for managing a bleeding disorder.
  • Guidance for discussing the condition with family and friends.
  • Tips for ensuring safety at home.
  • Creating an emergency plan or grab bag and obtaining a travel/ER letter.
  • Concerns about starting childcare or using babysitters.

School-Age Children (Ages 6–12)

  • On-demand versus prophylactic treatments and transitioning from a central venous access device (CVAD) to venipuncture.
  • Preparing your child for self-infusion and understanding what’s involved.
  • Tips for working with the school nurse, teachers, coaches, and administrative staff.
  • Understanding and navigating IEPs and 504 plans.
  • Preparing the school to accommodate your child’s needs during outings and field trips.
  • How does starting a sport impact our routine? What precautions should we take?
  • How to inform caregivers, babysitters, and the parents of other children about your child’s bleeding disorder.
  • How puberty impacts bleeding disorders.
  • Preparing for menstruation: Meet with an adolescent gynecologist to develop a plan for managing heavy menses.

Adolescents (Ages 12–18)

  • Starting discussions about the transition of care from pediatrics to adult services several years in advance. Ask about opportunities to meet adult providers or visit adult clinics in advance, especially if they are in a different area.
  • Encourage your child to be connected with mental health providers.
  • Discuss safe sex, drug use, and alcohol consumption, considering the added risks associated with a bleeding disorder.
  • Navigating romance and disclosing a bleeding disorder to partners.
  • Addressing concerns about activities like masturbation or sexual intercourse, including the potential for bleeds or vaginal bleeding.
  • Supporting body image concerns.
  • Preparing for and managing heavier menstrual bleeding.
  • Planning for major life milestones, such as obtaining a job, attending college, or moving out, while maintaining independence in medical care.

Young Adulthood (Ages 18–30)

  • Finalizing plans for increased independence, such as going to college, moving away from home, or starting a job.
  • Decide who should know about your bleeding disorder in case of emergencies (dorm staff, workplace supervisors, etc.).
  • Navigating health insurance, job benefits, and whether to disclose a bleeding disorder to employers.
  • Family planning and genetic counseling.
  • Managing menstruation challenges, pregnancy, and gynecological care.

Mature Adulthood (Ages 30+)

  • Understanding the roles of your HTC versus your primary care provider.
  • The importance of primary care follow-ups for managing conditions such as hypertension, heart disease, diabetes, and cancer, especially if there is a family history.
  • Maintaining healthy ways to stay active.
  • Aging with a bleeding disorder and its potential impact.
  • Navigating physical limitations as they arise.