Engaging patients in blood systems: A qualitative study on immune globulin recipient perspectives

Plasma-derived medical products (PDMPs) can represent life-saving treatments for immunodeficiencies, autoimmune diseases, and other health conditions. Immunogloublin (Ig) is a PDMP used to treat a large number of inherited or acquired diseases. As the beneficiaries of a highly complex supply chain, recipients of Ig can illuminate the practical implications of supply challenges and policy initiatives on their health and well-being. This study explores the perspectives of Ig recipients.

This paper stems from a study based on Narrative Inquiry, which delved into the experiences and perspectives of Ig recipients. A two-interview format was employed to capture 1, the recipient's diagnostic journey and challenges, reported elsewhere; and 2, their knowledge, awareness, and engagement in Ig production and distribution. The second interviews were analyzed with reflexive thematic analysis and are reported in this manuscript.

Participants in this study described access to Ig as variable and uncertain. The uncertainty was shaped by the relationships that they negotiated with the other social actors in the blood system. They described feeling bound to their physician as the gatekeeper to a diagnosis, and therefore treatment, and to navigate a complex health system on their behalf. They were deeply grateful for the plasma donor, but when access felt precarious, the reliance on the donor was unsettling due to uncertainty around product availability. Finally, participants felt removed from the process in which decisions were made about treatment.

Our study engaged Ig recipients as important social actors in the systems responsible for collecting and distributing Ig. Participants offered specific and thorough recommendations for meaningful change. Such guidance holds the potential to foster a more integrated environment in which all interest-holders collaborate to meet patient needs more equitably and sustainably.