Assessing Patient and Provider Perspectives, Clinical Practice, Behaviors, and Knowledge on Hemophilia A Care
Authors: Ackbarali Tariqa A , Croteau Stacy E. , Pipe Steven W. , Tickle Kelly , Long Lori , Wilkes Sonji , Nammacher Kate , Frick Neil , Kowalski Katie , Turell Wendy 
Published: February 2021

BACKGROUND: The management of severe hemophilia A with and without inhibitors is evolving rapidly. Clinicians who manage patients with hemophilia A may lack confidence in how to optimally utilize extended half-life factor replacement agents as well as non-factor replacement agents for prophylaxis, and in managing complications such as inhibitor development in those with severe hemophilia. Patients with hemophilia and their families are burdened by the complexity of managing their care and would benefit from improved understanding of the disease state, treatment options, how to decrease bleeding episodes, and optimize their quality of life. For these reasons, a web-based joint educational initiative for patients/caregivers and HCPs was created.

METHODS: In collaboration with Hemophilia Federation of America, National Hemophilia Foundation, and National Organization for Rare Disorders, a 1-hour online video-based CME activity for HCPs and 1-hour healthcare education activity for patients were created in June, 2020 to address identified practice and knowledge needs among HCPs, and knowledge, communication and self-efficacy behaviors among patients. Each activity consisted of slides, polling and live questions, and remains on-demand for 12 months at www.OMedLive.com and RareDiseaseLive.com, and on Facebook video for patients and caregivers. Test questions were administered at 3 time points (pre-, immediate post-, and 2 mos. post-activity). Data from these test questions, responses to live polling questions, and learner-submitted questions during live Q&A were analyzed to determine engagement, lessons learned and continuing education gaps.

RESULTS: As of August 2020, 235 HCPs and 2,384 patients took part in the ongoing activities. Post education, HCP learners (n=79) anticipated the education would positively impact patient clinical outcomes (84%) and their practice behavior (80%). Improvements in pre/post knowledge and case-based competence questions were realized in all 4 administered HCP pre/post questions. For patients and caregivers, knowledge improvements were observed in 3 out of 4 pre/post questions, and a shift was also observed towards preference for more shared models of decision making, and towards increased confidence with HCP communication and managing their own care/the care of the person for whom they care. Differences were observed in patient versus provider perceptions of hemophilia-related challenges. Behavioral changes indicated by patients and providers following the educational activities will be reported and grouped by theme. Two-month follow up post-tests will be administered to HCPs and patient-caregivers who took part in the educational programs, and statistical significance of change and effect size for all repeated test questions will be reported.

CONCLUSIONS: Joint CME and patient education can yield insights into clinical practice behaviors; patient healthcare communication, preferences, and confidence; and treatment knowledge of Hemophilia A. Together, aligned education directed to HCPs and patients can improve the ability to provide evidence-based treatment for patients.

Disclosures

Croteau: Bayer: Consultancy; Genentech: Consultancy; Pfizer: Consultancy; Novo Nordisk: Research Funding; CSL-Behring: Consultancy; Spark Therapeutics: Research Funding; ATHN: Research Funding; Sigilon Therapeutics: Consultancy; National Hemophilia Foundation: Honoraria; Hemophilia Federation of America: Honoraria. Pipe:Apcintex, Bayer, BioMarin, Catalyst Biosciences, CSL Behring, HEMA Biologics, Freeline, Novo Nordisk, Pfizer, F. Hoffmann-La Roche Ltd/Genentech, Inc., Sangamo Therapeutics, Sanofi, Takeda, Spark Therapeutics, uniQure: Consultancy; Siemens: Research Funding; Medical and Scientific Advisory Council to the National Hemophilia Foundation; Medical Advisory Board to World Federation of Hemophilia: Membership on an entity's Board of Directors or advisory committees. Tickle:National Hemophilia Foundation: Other, Research Funding; Platform Q Health: Honoraria.