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Best Practices Models in Care for Hemophilia

May 4, 2020

General News

STEP UP for Rare Care

Best Practices Models in Care for Hemophilia

Pharmaceutical manufacturer, Takeda, embarked on a rare disease initiative to improve the implementation of personalized care by focusing on the role of the nurse as part of a multidisciplinary team in hemophilia care delivery. Currently, 75% of people with hemophilia globally receive inadequate or no treatment for their condition.

The study supposed that engaging, informing and empowering nurses alongside other multidisciplinary team members with examples of best practices may support improvements in hemophilia care provisions.

WNY BloodCare was one of nine hemophilia treatment organizations selected to represent a variety of sizes, geographic, healthcare systems and care settings (academic vs. non-academic; pediatric vs. adult vs. mixed)

  • London Health Sciences Centre – Ontario, Canada
  • Katherine Dormandy Hemophilia and Thrombosis Center – London, UK
  • Erasmus University Medical Centre HTC – Rotterdam, The Netherlands
  • WNY BloodCare (Hemophilia Center of WNY) – Buffalo, NY, USA
  • Le Fe HTC – Valencia, Spain
  • La Paz – Madrid, Spain
  • Maimo HTC – Maimo, Sweden
  • Pediatric Hemophilia Centre – Frankfurt, Germany
  • Hemophilia and Thrombosis Center of the University of Colorado – Aurora, Colorado, USA


  • Identify globally applicable best practice models of care
  • Position Nurses as a pivotal member of the multidisciplinary team
  • Consistently access standard-of-care multidisciplinary services

Best Practice Themes:

  • Hemophilia Team Education & Professional Development
  • Care Delivery Modes
  • Patient Education & Support
  • Multidisciplinary Alignment
  • Quality Assurance & Assessment

These are the Best Practices of WNY BloodCare recognized by the Expert Panel as part of the global study.

These are the Best Practices of WNY BloodCare recognized by the Expert Panel as part of the global study.

Team Education & Professional Development

Best Practice #1 - Transition Guidelines

Comprehensive care team members have role-specific guidelines to help people with hemophilia transition from pediatric to adult care based on readiness rather than reaching a specific age.

“The piece we and every HTC struggle with is: How do you know that what you’re teaching patients is being retained? We developed and are testing a questionnaire to determine whether behaviors have changed following introduction of the guidelines.” – Executive Director – Laurie Reger


Care Delivery Modes

Best Practice #2 – Home Therapy Agreements

A robust educational program delivered at comprehensive clinics means people with hemophilia or caregivers are trained to administer infusions from an early age. A home therapy agreement ensures people receiving home infusions remain engaged with comprehensive care and understand basic safety requirements.


Best Practice #3 – Nurse-led Triage On-Call Phone Lines

Patients can reach on-call clinical staff at all times via our telephone triage line. We receive about eight to ten calls a month from people with hemophilia or caregivers, who are encouraged to make contact about every bleed and any worrying bruises.  Patients admitted to the emergency room are encouraged to advise attending physicians to call as a priority to discuss how to proceed with treatment. This service is particularly valuable for people receiving home infusions.

Patient Education & Support

Best Practice #4 – Genetic Counseling in Comprehensive Clinics

Every patient attending comprehensive clinics has the opportunity to see a genetic counselor. Our Genetic Counselor captures genetic pedigree (family trees) for people newly diagnosed with hemophilia, discusses the option of genetic testing in conjunction with the hematologist, including psychological and practical aspects of testing (e.g. legal rights and challenges with getting life insurance), orders genetic tests as needed and discusses prenatal testing with carriers. Rare bleeding and coagulation disorders may require full gene sequencing, which may lead to different treatment decisions, or a decision to discuss testing with relatives.

Best Practice #5 – Educational Program for Patients & Caregivers

WNY BloodCare runs self-management educational programs throughout the year, including focused sessions for people with hemophilia, family members and carriers.

Children and adults with hemophilia receive age-appropriate education at each comprehensive clinic, including: – Infusion skills – Managing medical insurance, deductibles and out of pocket expenses. Education around safe participation in sports and sexual activities is particularly important for older children and teenagers with mild hemophilia, and those who have been on prophylaxis since childhood and don’t experience many bleeds • Parents are taught about adapting the home environment when babies become toddlers.

Materials used in patient and caregiver education at WNY BloodCare:
• WFH booklet: What is Hemophilia?
• NHF Steps for Living: My HTC and Me booklet (available in Spanish and English)
• NHF Playing it Safe booklet on sports and exercise
• NHF Facts About Inhibitors booklet
• Indiana HTC’s Carriers of Hemophilia: What you Need to Know
• Books for toddlers on ports and self-puncture

Best Practice #6 – Nurse Led Adherence Solutions

Nurses at WNY BloodCare play a key role in reviewing medication adherence and addressing issues with infusion schedules. Nurses piloted a small at home monitor, which offers treatment reminders and passive data logging capabilities, reducing the patient’s administrative burden and instantly transmitting infusion information to the patient’s care team.

“At-home monitoring has convinced some of our patients of the benefits of prophylaxis versus infusing on demand, because they can actually visualize their lack of breakthrough bleeds based on their infusion history,” WNYBC Nurse


Best Practice #7 – School Education Program

Nursing team members visit schools to provide education to teachers, gym staff and school nurses about hemophilia. WNY BloodCare nurses ensure that people who interact with children know what precautions to take, how to recognize a bleed and who to call in an emergency.

“We have a wonderful tool for nurses called the School Kit, which has 30 handouts that you can leave for a school visit, for the teacher, the gym teacher, covering differing aspects of the visit,” WNYBC Nurse and Quality Coordinator

Best Practice #8 – Transition Support at an Integrated Adult/Pediatric Facility

People with hemophilia are encouraged to develop independence from an early age (e.g. six or seven years), with activities like booking clinic appointments and learning how to self-infuse factor replacement. Guidelines list age-appropriate ‘independent healthcare behaviors’ that people with hemophilia are helped to master before progressing to the next step.

An individual’s transition notes are kept in their electronic medical records so they can be easily passed on to another provider if needed (e.g. if the patient goes to college)

  • A new provider will have access to a record of all the education the patient has received since birth.
  • Transition notes also include growth milestones and immunizations appropriate for each age group, as well as a psychological assessment to determine readiness to transition to adult care.

Multidisciplinary Alignment

Best Practice #9 - Clinic for Girls & Women

The S.H.E. Clinic ( at WNY BloodCare is a medical home for females at every stage of their lives.

Bleeding disorders in girls and women can impact school, work and play. Heavy bleeding could be a sign of a bleeding disorder. Bleeding and clotting disorders in girls and women can go undiagnosed. In fact, of those that present with heavy menstrual bleeding, 20% – 30% could have a bleeding disorder.

The S.H.E. Clinic runs monthly diagnostic and treatment clinics for girls and women with bleeding disorders. Clinics provide an opportunity to identify symptomatic carriers of hemophilia, as well as a route to pre-natal detection of hemophilia. S.H.E. Clinic medical professionals build links with families with a history of hemophilia and other bleeding disorders. The S.H.E. Clinic mission is to improve the quality of life for our patients.


Best Practice #10 – Integrated Onsite Pharmacy

WNY BloodCare’s 340B onsite pharmacy dispenses factor concentrate to patients and local hospitals, and also facilitates home infusion services. Revenue generated from the 340B pharmacy is invested in specialist patient services for people with hemophilia, such as the onsite hemostasis laboratory. Our comprehensive clinics are funded through the proceeds of the 340B.

340B pharmacies were created in 1992 as part of the Veteran’s Health Care Act. Most HTCs in the USA have 340B pharmacies, which means they can purchase clotting factor at a discount and use the revenue to fund other specialist services for people with hemophilia.


Quality Assurance & Assessment

Best Practice #11 – Quality Assurance Work Groups & Quality Coordinator

WNY BloodCare’s robust quality improvement program collects data via patient surveys and records on patient visits, morbidity, mortality and complaints, as well as trends within the industry. Each staff member must be part of at least one quality of care initiative, such as: Follow-up care – Transition guideline implementation – Patient education. Findings related to quality of care are reported back to the quality committee which includes six core staff members and is chaired by the pediatric medical director. One of the hemophilia nurse coordinators runs the quality improvement initiatives, including data collection and documentation.

“Documentation is key. Our motto is ‘Not documented, not done'.”  Quality Coordinator/hemophilia Nurse

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