Physician-patient communication and shared decision-making approaches in myeloproliferative neoplasm care.

Abstract

e18589 Background: About 20,000 people are diagnosed with Myeloproliferative Neoplasms (MPNs) in the US each year, and almost 300,000 have the disease. Age, race, and gender can affect clinical outcomes. Although this condition is rare, the diverse patient population shows the need for a culturally sensitive approach to address gaps in communication regarding MPN care and the unique challenges that physicians face. The Empowering Providers to Empower Patients (EPEP) MPN initiative, developed by the Patient Empowerment Network, aims to improve physician-patient communication, shared decision-making, and the role of patients, care partners, and providers in that process. We evaluated engagement with the initiative to understand its impact. Methods: In 2024, the initiative produced two roundtables and six short videos, primarily with physicians of color. The roundtables were: “Advancing Practice and Enhancing Myeloproliferative Neoplasm Care,” and “Breaking Through Myelofibrosis Practice Barriers.” In the latter, Dr. Raajit K. Rampal emphasized “open lines of communication. I think that from the perspective of [health care professionals] in the community, we want to know that [patients] have questions. We want to make ourselves available to answer those questions. And then I think from the specialist side of things, we have to make ourselves available to address these questions and make ourselves accessible.” After each roundtable, viewers (n=26) completed a mixed methods questionnaire. Quantitative ratings assessed their satisfaction and confidence to facilitate shared decision-making and qualitative questions elicited whether they found relevant resources to share with patients and other topics they wanted to see. Results: Almost all viewers were highly satisfied with the roundtables and rated them extremely positively. The majority strongly agreed that the program gave them the confidence to better facilitate shared decision-making with their patients. Overall, respondents appreciated the resources, found them informative, and valued their role in enhancing the provider’s ability to deliver quality, patient-centric care. Almost all said they found relevant tools to share with their patients, including knowledge of the appropriate language, an emphasis on cultural humility in healthcare, and patient advocacy groups. Suggested future topics included education on symptoms & side effects, the role of care partners in patient interactions, and understanding of treatment goals vs QOL goals. The initiative has been viewed 12,035 times. Conclusions: The initiative is a powerful resource that could enhance physician-patient communication through targeted strategies that equip providers with cultural competency tools. EPEP is a unique contribution to MPN care education and a model for future programs to address gaps in cancer communication for rare diseases.