Overview
Taking Aim on Hemophilia A: Establishing Collaborative Practices Between Hemophilia Treatment Centers (HTCs) and Community Providers to Mitigate Inequities in Care
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The expanding armamentarium of therapies for hemophilia A shifts the therapy selection process from a simple algorithmic approach to an individualized approach. Yet persistent geographical and gender-based inequities in care undermine earlier recognition and optimal access to treatment for many patients.
Individuals residing in rural locations in distant proximity to hemophilia treatment centers (HTCs), may experience delayed diagnosis and decreased access to care, including limited access to novel extended half-life and non-factor replacement therapies which often must be sourced through larger centers able to provide more specialized care. And while hemophilia is often thought of as a condition primarily affecting males, women with mild to moderate forms may experience heavy menstrual periods, easy bruising, or prolonged bleeding after surgery or injury, and often remain undiagnosed. These women, as well as men with mild to moderate forms of hemophilia, may unknowingly put themselves in higher-risk situations and fail to recognize a bleeding episode when it occurs.
To improve evidence-based hemophilia A care for all patients, this activity supports community providers and hemophilia specialists with developing efficient and effective clinical protocols and pathways to improve recognition, referral, and individualized prophylactic management of patients with mild or moderate hemophilia A.
This activity is intended for early- to mid-career hematologists practicing in HTCs and community settings, internal medicine, family practice, OB/GYNs, emergency physicians, and other members of the interprofessional teams with emphasis on clinicians practicing in community health centers treating underinsured and high-risk patients.
Patients who do not live in proximity to a hemophilia treatment center (HTC) may experience delayed diagnosis and decreased access to care. Several patient populations who may benefit from treatment are also not referred to an HTC. These include women with hemophilia who may experience additional symptoms or bleeding complications during menstruation or pregnancy that make the disease harder to diagnose, leading to a lack of testing, accurate diagnosis, and optimal treatment. Awareness of the impact of mild hemophilia is low among clinicians and patients alike. Despite its impact on quality of life and the potential for complications such as bleed-related joint damage, patients with mild disease are underrecognized and undertreated. This may be due to lack of knowledge or dismissal of patient symptoms due to erroneous assumptions around being a hemophilia A carrier. Clinicians require greater knowledge regarding bleeding disorder symptoms, including recognition of mild symptoms and the ability to distinguish between ‘normal’ vs ‘abnormal’ bleeding in order to refer eligible patients to an HTC for diagnostic testing and potential prophylactic treatment. Prophylaxis, an essential component of care for individuals with hemophilia A, is increasingly complex with the availability of novel agents, requiring careful consideration of benefits, risks, and patient goals.
Upon completion of this activity, learners will be able to:
•Describe the persistent inequities in hemophilia care
•Assess current clinical practices and identify areas that may contribute to sub-optimal patient outcomes
•Develop individualized management plans to mitigate risk in patients with mild or moderate disease
•Establish collaborative care pathways between primary and specialty care to reduce care gaps in the diagnosis and treatment of hemophilia A
•Describe the persistent inequities in hemophilia care
•Assess current clinical practices and identify areas that may contribute to sub-optimal patient outcomes
•Develop individualized management plans to mitigate risk in patients with mild or moderate disease
•Establish collaborative care pathways between primary and specialty care to reduce care gaps in the diagnosis and treatment of hemophilia A
Overview of Inequities in Hemophilia Care
Underrecognized and Undertreated Patients
Assessment and Treatment to Preserve Joint Health
How the Evolving Treatment Landscape May Address Unmet Clinical Needs
Monitoring FVIII/FIX Activity
Inhibitors in HA
Improving Coordination of Care Between HTCs and Community Providers
Patient Needs During Diagnosis and Referral
A Patient Perspective on Women in Hemophilia and Diagnostics Challenges
Underrecognized and Undertreated Patients
Assessment and Treatment to Preserve Joint Health
How the Evolving Treatment Landscape May Address Unmet Clinical Needs
Monitoring FVIII/FIX Activity
Inhibitors in HA
Improving Coordination of Care Between HTCs and Community Providers
Patient Needs During Diagnosis and Referral
A Patient Perspective on Women in Hemophilia and Diagnostics Challenges
This educational activity is presented in collaboration with Rush University Medical Center and the Academy for Continued Healthcare Learning (ACHL).
Supported by an educational grant from Sanofi.
Leonard Valentino, MD (Faculty)
Professor, Pediatrics
Rush University Medical Center
Chicago, IL
Professor, Pediatrics
Rush University Medical Center
Chicago, IL
Lucy Ramirez, MSW, LCSW (Faculty)
Clinical Social Worker
Rush Hemophilia Treatment Center
Chicago, IL
Chrissy Cotts, BSN
Patient Advocate
Amanda Li, MSN, RN (Nurse Planner)
Rush University Medical Center
Giles Slocum, PharmD (Pharmacy Planner)
Rush University Medical Center
It is the policy of the Interprofessional Continuing Education office at Rush to ensure that its CE activities are independent, free of commercial bias. Therefore, we manage all financial relationships associated with accredited continuing education activities. RUSH asks everyone who has the ability to control or influence the content of an educational activity to disclose information about all of their financial relationships with ineligible companies within the prior 24 months. An ineligible company is an entity whose primary business is producing, marketing, selling, re-selling or distributing healthcare products used by or on patients. There is no minimum threshold; individuals must disclose all financial relationships, regardless of the amount, with ineligible companies. Individuals must disclose regardless of their view of the relevance of relationships to education. Mechanisms are in place to identify and mitigate any potential conflicts of interest prior to the planning, implementation, or evaluation of the continuing education activity. If a financial relationship is identified for the person in control of content, conflict mitigation strategies will be used to mitigate the financial relationship before they assume their role.
Individuals in control of content for this activity have the following relevant financial relationships with ineligible companies to disclose and all financial relationships have been mitigated.
The following financial relationships have been provided:
Leonard Valentino, MD (Faculty)
Consultant: Biomarin, Pharmaceuticals, Inc., Inovio Pharmaceuticals, Inc., Regeneron Pharmaceuticals, Inc., Sanofi, Takeda Pharmaceuticals, Inc.
Lucy Ramirez, MSW, LCSW (Faculty)
No financial relationships to disclose.
Chrissy Cotts, BSN (Patient Advocate)
No financial relationships to disclose.
Amanda Li, MSN, RN (Nurse Planner)
No financial relationships to disclose.
Giles Slocum, PharmD (Pharmacy Planner)
No financial relationships to disclose.
Rush University Medical Center and the Office of Interprofessional Continuing Education staff members, ACHL staff members, and others involved with the planning, development, and review of the content for this activity have no relevant affiliations or financial relationships to disclose.
The content for this activity was developed independently of any ineligible company. All materials are included with permission. The opinions expressed are those of the faculty and are not to be construed as those of the publisher or grantor(s).
This educational activity was planned and produced in accordance with the ACCME Standards for Integrity and Independence in Accredited Continuing Education. Recommendations involving clinical medicine in a continuing medical education (CME/CE) activity must be based on evidence that is accepted within the profession of medicine as adequate justification for their indications and contraindications in the care of patients. All scientific research referred to, reported, or used in CME/CE in support or justification of a patient care recommendation must conform to the generally accepted standards of experimental design, data collection, and analysis.
Unapproved Uses of Drugs/Devices: In accordance with requirements of the FDA, the audience is advised that information presented in this continuing medical education activity may contain references to unlabeled or unapproved uses of drugs or devices. Please refer to the FDA approved package insert for each drug/device for full prescribing/utilization information.
Discussion of scientific information on unapproved uses (SIUU), off-label, investigational, or experimental drug/device use: None
Pharmacists should consult with their state pharmacy on pharmacist vaccination authority included within their scope of practice.
This activity will take up to 1.75 hours to complete. To receive credit, learners are required to complete the preassessment, view the online activity, complete action planning, the posttest, and the evaluation. A certificate will be immediately available. There is no fee to participate in the activity or for the generation of the certificate.
In support of improving patient care, Rush University Medical Center is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.
This activity is being presented without bias and with commercial support.
Physician assistants (PAs) and nurse practitioners (NPs) may participate in this educational activity and earn a certificate of completion as AAPA and AANP accept AMA PRA Category 1 Credits™ through their reciprocity agreements.
Successful completion of this CME activity, which includes participation in the evaluation component, enables the learner to earn credit toward the CME of the American Board of Surgery’s Continuous Certification program. It is the CME activity provider’s responsibility to submit learner completion information to ACCME for the purpose of granting ABS credit.
Rush University Medical Center designates this Enduring Material for a maximum of 1.75 nursing contact hour(s).
Rush University Medical Center designates this application-based activity for a maximum of 1.75 contact hour(s) for pharmacists. ACPE Universal Activity Number: JA0000275-0000-25-272-H01-P
As a Jointly Accredited Organization, RUSH University Medical Center is approved to offer social work continuing education by the Association of Social Work Boards (ASWB) Approved Continuing Education (ACE) program. Organizations, not individual courses, are approved under this program. Regulatory boards are the final authority on courses accepted for continuing education credit. Social workers completing this course receive 1.75 clinical continuing education credits.
Completion of this activity, including the pretest, posttest, and follow-up assessments, qualifies as a medium weight MIPS improvement activity under MACRA and can be claimed as completion of IA_PSPA 28 of an Accredited Safety or Quality Improvement Program in the Quality Payment Program. Clinicians should submit their improvement activities by attestation via the CMS Quality Payment Program website. You will receive additional information after completing the activity and receiving your certificate via email.
