Enhancing PNH Care: Collaborative Decision-Making and Improving Patient Experience
Panelists discuss how a patient-centered approach, shared decision-making, and clear communication between physicians, patients, and caregivers are essential in improving care, treatment adherence, and long-term management for individuals with paroxysmal nocturnal hemoglobinuria (PNH).
This program was made possible with support from Novartis Pharmaceuticals.
EP. 1: Recognizing PNH and Initial Challenges
December 19th 2024Panelists discuss how Brandi first noticed symptoms leading to her paroxysmal nocturnal hemoglobinuria (PNH) diagnosis, highlighting the challenges of the initial diagnostic process, and explore the impact of fatigue and brain fog on her daily life. They also address how clinicians assess the severity of these symptoms during consultations and what they indicate about disease progression or treatment needs.
EP. 2: Empowering Patients in Treatment Planning
January 4th 2025Panelists discuss resources and strategies to help patients and caregivers cope with the initial shock of a paroxysmal nocturnal hemoglobinuria (PNH) diagnosis, emphasizing critical points during the first consultation, and explore how Brandi communicated her treatment preferences to her care team, reflecting on her sense of inclusion in the decision-making process and areas for improvement.
EP. 3: Navigating Treatment Options: Understanding Risks and Benefits
January 9th 2025Panelists discuss how to help patients weigh the risks and benefits of different treatment options for paroxysmal nocturnal hemoglobinuria (PNH), outlining tools and techniques used to ensure that patients and caregivers fully understand their choices and make informed decisions.
