Abstract Number: PB0589
Meeting: ISTH 2021 Congress
Background: In Ireland, in 2017 all people with severe haemophilia B (PWSHB) switched from standard half-life (SHL) factor IX (FIX) to prophylaxis with recombinant factor IX Fc fusion protein (rFIXFc).
Aims: To gain insight into the lived experience of PWSHB following three years of rFIXFc prophylaxis.
Methods: Key areas and themes for evaluation were identified by a focus group. A pilot study to investigate feasibility and applicability of questions was performed. PWSHB (≥ 18 years) who switched to rFIXFc prophylaxis were then invited to participate in a qualitative study. Online semi-structured interviews were carried out by two psychologists, audio recorded, transcribed and subsequently analysed for common themes.
Results: Areas identified from the focus group for exploration included symptom change, impact on life, experience of treatment change, agency and sense of self. Fourteen PWSHB, median age 52 years (range 20-73 years), who switched from episodic treatment (n=3) or prophylaxis (n=11) with SHL-FIX to rFIXFc prophylaxis participated.
Preliminary analysis revealed a number of key themes characterising participants’ experience of the treatment change. A more “Secure Self” emerged with rFIXFc prophylaxis regimen: participants reported less worry about bleeds, which produced a greater sense of safety, security and control over daily living. This sense of security underpinned the development of the “Confident self”: patients were not only more confident in managing their haemophilia and bleeds, but more confident in being active and engaged. The change was experienced as a shift in focus as participants now experienced “Illness in background, life in foreground”: worries about bleeds are still present but they are more in the back of the mind, and the patients’ focus is now on pursuing valued activities.
Conclusions: Preliminary analysis suggests that switching to rFIXFc prophylaxis has resulted in a positive patient experience. Additional analysis will provide further insight into the transition.
To cite this abstract in AMA style:O'Donovan M, Byrne P, O'Mahony B, Ryan K, O'Connell NM, Hevey D. Impact of Switching to Recombinant Factor IX Fc Fusion Protein Prophylaxis: A Qualitative Study [abstract]. Res Pract Thromb Haemost. 2021; 5 (Suppl 1). https://abstracts.isth.org/abstract/impact-of-switching-to-recombinant-factor-ix-fc-fusion-protein-prophylaxis-a-qualitative-study/. Accessed September 16, 2021.
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