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PubMed This is a summary of 13 peer-reviewed journal articles Updated
Hematology

Building Your Care Team & Long-Term Management

At a Glance

Long-term hemophilia management is best handled at a Hemophilia Treatment Center (HTC) by a multidisciplinary team. As patients age, care focuses on safely transitioning to adult hematologists and balancing bleeding risks with age-related conditions like heart disease and osteoporosis.

Hemophilia is a lifelong journey, and as medical treatments have advanced, the focus has shifted from mere survival to thriving at every stage of life. Managing this condition requires a specialized team and a proactive plan that evolves as you move from childhood into adulthood and eventually into your senior years [1].

Your Home Base: The Hemophilia Treatment Center (HTC)

The gold standard for hemophilia care is the Hemophilia Treatment Center (HTC). These centers use a “comprehensive care model,” meaning they treat the whole person, not just the bleeding disorder. Studies show that patients who receive care at an HTC have better health outcomes and lower rates of hospitalization [2][3].

Your multidisciplinary team at an HTC typically includes:

  • Hematologists: Doctors specializing in blood disorders.
  • Specialized Nurses: Experts in hemophilia who often serve as your primary point of contact.
  • Physical Therapists: Specialists who help preserve joint health and design safe exercise programs [4].
  • Social Workers: Professionals who help with the emotional and logistical aspects of the disease, including insurance and school/work accommodations [5].

The Bridge: Transitioning to Adult Care

One of the most critical times in a patient’s life is the transition from a pediatric hematologist to an adult hematologist. This process should not be a single event, but a gradual “handover” that starts in the early teens [1].

  • The Risk: Patients who do not have a structured transition are at a higher risk of “falling through the cracks,” leading to missed infusions and increased joint bleeds.
  • The Goal: By age 18, a patient should be able to explain their diagnosis, know their factor dose, and ideally, be able to perform their own infusions [1].

Aging Gracefully: New Challenges

Because people with hemophilia are now living much longer, they are facing the same health challenges as the general population, such as heart disease and bone health issues. However, managing these in hemophilia requires a very careful touch [6].

Heart Health and “Blood Thinners”

As we age, risks for cardiovascular disease (like heart attacks or strokes) and atrial fibrillation (an irregular heart rhythm) increase.

  • The Dilemma: These conditions often require “blood thinners” (anticoagulants or antiplatelets). In a person with hemophilia, these medications can significantly increase the risk of bleeding [6][7].
  • The Solution: Management requires close collaboration between your hematologist and cardiologist. In some cases, procedures like left atrial appendage occlusion (LAAO)—a tiny device placed in the heart—can reduce the need for long-term blood thinners [8][9].

Bone Health and Osteoporosis

People with hemophilia have a higher risk of osteoporosis (weak bones) and fractures. This can be caused by several factors, including decreased physical activity due to joint pain and the inflammatory effects of repeated bleeds [10][11].

  • Monitoring: Experts now recommend routine bone health screenings, such as a DEXA scan, to monitor bone density as patients age [12][13].
  • Supplementation: Ask your HTC team if you should be taking Vitamin D and Calcium supplements. This is a concrete, actionable step many patients can take to proactively protect their bone density.

By staying connected to your HTC and being proactive about your health, you can navigate these life transitions with confidence and maintain a high quality of life [2][1].

Common questions in this guide

What is a Hemophilia Treatment Center (HTC)?
A Hemophilia Treatment Center provides comprehensive, multidisciplinary care that treats the whole person, not just the bleeding disorder. Patients who receive care at an HTC generally experience better health outcomes and lower rates of hospitalization.
When should someone with hemophilia transition to adult care?
The transition from pediatric to adult care should be a gradual process that starts in the early teens. By age 18, patients should ideally understand their diagnosis, know their proper factor dose, and be able to perform their own infusions.
Can people with hemophilia take blood thinners for heart conditions?
Taking blood thinners increases the risk of serious bleeding for people with hemophilia. Managing heart conditions requires close coordination between your hematologist and cardiologist, and may sometimes involve procedures to reduce the need for long-term blood thinners.
How does hemophilia affect bone health?
People with hemophilia have a higher risk of developing weak bones and fractures. This is often due to decreased physical activity from joint pain and the inflammatory effects of repeated joint bleeds over time.
Should I get a bone density scan if I have hemophilia?
Experts recommend routine bone health screenings, such as a DEXA scan, to monitor bone density as you age. You can also talk to your HTC team about taking Vitamin D and Calcium supplements to proactively protect your bones.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.Who is our primary point of contact on the multidisciplinary team at the HTC, and how do we reach them after hours?
  2. 2.What age does your center begin the 'transition to adult care' process, and what skills should I (or my child) be practicing now?
  3. 3.As I age, how will we monitor my cardiovascular risk factors like blood pressure and cholesterol while balancing my bleeding risk?
  4. 4.Should we schedule a DEXA scan to check my bone density, especially if I have had limited physical activity due to joint pain?
  5. 5.If I ever need a blood thinner for a heart condition, how will we manage my factor levels to prevent a major bleed?

Questions For You

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References

References (13)
  1. 1

    Haemophilia.

    Chowdary P, Carcao M, Kenet G, Pipe SW

    Lancet (London, England) 2025; (405(10480)):736-750 doi:10.1016/S0140-6736(24)02139-1.

    PMID: 40023652
  2. 2

    Factors Associated with Compliance with the Treatment Protocol and Mortality in Adults with Hemophilia.

    Soares BMD, Simeoni LA, de Almeida KJQ, et al.

    Patient preference and adherence 2020; (14()):2279-2285 doi:10.2147/PPA.S279401.

    PMID: 33262579
  3. 3

    Hemophilia in the managed care setting.

    Dalton DR

    The American journal of managed care 2015; (21(6 Suppl)):S123-30.

    PMID: 26168207
  4. 4

    Multidisciplinary Team Care of Patients with Hemophilic Arthropathy: A Qualitative Assessment of Contemporary Practice in the UK and Canada : Canada/UK: MDT Practices for Hemophilia.

    St-Louis J, Chowdary P, Dolan G, et al.

    Clinical and applied thrombosis/hemostasis : official journal of the International Academy of Clinical and Applied Thrombosis/Hemostasis 2022; (28()):10760296211070002 doi:10.1177/10760296211070002.

    PMID: 35060765
  5. 5

    Understanding stakeholder important outcomes and perceptions of equity, acceptability and feasibility of a care model for haemophilia management in the US: a qualitative study.

    Lane SJ, Sholapur NS, Yeung CH, et al.

    Haemophilia : the official journal of the World Federation of Hemophilia 2016; (22 Suppl 3()):23-30 doi:10.1111/hae.13009.

    PMID: 27348398
  6. 6

    Long-Term Antithrombotic Treatments Prescribed for Cardiovascular Diseases in Patients with Hemophilia: Results from the French Registry.

    Guillet B, Cayla G, Lebreton A, et al.

    Thrombosis and haemostasis 2021; (121(3)):287-296 doi:10.1055/s-0040-1718410.

    PMID: 33099283
  7. 7

    Use of antithrombotic therapy in patients with hemophilia: a selected synopsis of the European Hematology Association - International Society on Thrombosis and Haemostasis - European Association for Hemophilia and Allied Disorders - European Stroke Organization Clinical Practice Guidance document.

    Escobar M, Lassila R, Bekdache C, et al.

    Journal of thrombosis and haemostasis : JTH 2025; (23(2)):745-749 doi:10.1016/j.jtha.2024.10.033.

    PMID: 39571935
  8. 8

    Left atrial appendage occlusion in haemophilia patients with atrial fibrillation.

    Kramer AD, Korsholm K, Kristensen A, et al.

    Journal of interventional cardiac electrophysiology : an international journal of arrhythmias and pacing 2022; (64(1)):95-102 doi:10.1007/s10840-021-01090-z.

    PMID: 34822042
  9. 9

    Left atrial appendage closure: a balanced management of the thromboembolic risk in patients with hemophilia and atrial fibrillation.

    Toselli M, Bosi D, Benatti G, et al.

    Journal of thrombosis and thrombolysis 2020; (50(3)):668-673 doi:10.1007/s11239-020-02097-5.

    PMID: 32270397
  10. 10

    Bone health in haemophilia carriers and persons with von Willebrand disease: A large database analysis.

    Citla-Sridhar D, Sidonio RF, Ahuja SP

    Haemophilia : the official journal of the World Federation of Hemophilia 2022; (28(4)):671-678 doi:10.1111/hae.14565.

    PMID: 35416396
  11. 11

    Effect of low-dose factor VIII prophylaxis therapy on bone mineral density and 25(OH) vitamin D level in children with severe haemophilia A.

    Gamal Andrawes N, Hashem Fayek M, Salah El-Din N, Atef Mostafa R

    Haemophilia : the official journal of the World Federation of Hemophilia 2020; (26(2)):325-332 doi:10.1111/hae.13917.

    PMID: 31884718
  12. 12

    Bone Health Screening in Persons With Bleeding Disorders: A Survey of United States Haemophilia Treatment Centres.

    Citla-Sridhar D, Ahuja S, Sidonio R, et al.

    Haemophilia : the official journal of the World Federation of Hemophilia 2025; (31(3)):519-525 doi:10.1111/hae.70027.

    PMID: 40052405
  13. 13

    The influence of severity of hemophilia on bone mineral density and fracture risk.

    Ransmann P, Hmida J, Brühl M, et al.

    Research and practice in thrombosis and haemostasis 2024; (8(8)):102624 doi:10.1016/j.rpth.2024.102624.

    PMID: 39687923

This page provides general information on long-term hemophilia care and aging. It does not replace professional medical advice from your Hemophilia Treatment Center.

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