From the Voices of People with Haemophilia A and Their Caregivers
The Shift Health team of Ryan Wiley, Charles Khoury, Adrian Snihur and Marni Williams worked with co-authors David Page of the Canadian Hemophilia Society, Nicole Graham of Health Sciences North Children’s Treatment Centre, Lori Laudenbach and Cindy Milne-Wren of the London Health Sciences Centre, and Jayson Stoffman of the University of Manitoba to gather qualitative insights from 20 people living with haemophilia A (PWHA) and their caregivers across Canada through one-on-one interviews and focus groups. They identified several challenges, including administration of intravenous infusions, coordination of treatment schedules and ensuring adequate medication and supplies. Participants described how these challenges impact psychosocial wellbeing, physical health, personal/social life and work.
The paper concludes that considerations may help to inform decision‐making for policymakers and health systems around the true value of new therapies entering the haemophilia market.