Standards and Criteria for the Care of Persons with Congenital Bleeding Disorders

Publication Date: April 27, 2022
Last Updated: May 2, 2022

General Requirements

Core HTC team

  1. Core team member staff: Hematologist, Specialized Hemophilia Nurse, Physical Therapist and Social Worker.
  2. Each core team member must have adequate, clearly defined time and effort dedicated to the HTC, including time for patient care during and between comprehensive clinic visits, as needed.
  3. Core team participates regularly in continuing education, team conferences and program development.
  4. A hematologist with expertise in bleeding disorders must be available 24/7 for consultation.
  5. Round-the clock access to a specialized coagulation laboratory should be considered part of the core integrated care team.
  6. Team configuration and FTE are determined by the needs of the population served. HTC must reassess resources as diagnostic, treatment and patient needs change and evolve.
  7. Patient-centered care means that by virtue of their lived experience people living with bleeding disorders are subject matter experts in their own condition and thus should be considered an integral part of an individual patient’s care team.

Comprehensive Integrated DIsease Management Services

Patients Served

  • The patient population for HTCs include people with one or more diagnosed bleeding disorder(s), including but not limited to von Willebrand disease, hemophilia and other clotting factor deficiencies, and platelet disorders. Also, people with bleeding of unknown cause (BUC) (e.g., an unclassified bleeding disorder in a patient with increased bleeding score but negative hemostasis evaluation) and those with confirmed or potential hemophilia carrier status should receive care at an HTC.
  • Equitable access to diagnosis and treatment must be provided to all patients served at the HTC. Equity is defined as the consistent and systematic fair, just and impartial treatment of all individuals, including but not limited to individuals who belong to underserved communities that have been denied such treatment, such as Black, Latino, Indigenous and Native American persons, Asian Americans and Pacific Islanders and other persons of color; members of religious minorities; lesbian, gay, bisexual, transgender and queer (LGBTQ+) persons; persons with disabilities; persons who live in rural areas; and persons otherwise adversely impacted by persistent poverty or inequality.[3]
  • Strategies to reduce health care disparities must be identified and initiated at the HTC-level. Plans to address barriers to health care access, health disparities, and health literacy must be established. Progress toward meeting access and literacy needs should be evaluated through continuous quality improvement and patient and family satisfaction surveys. Outreach to underserved populations through provider and community partnerships must be performed.



Standards and Criteria for the Care of Persons with Congenital Bleeding Disorders

Authoring Organization