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Development of a novel shared decision making aid for primary immunodeficiency diseases
Tzivelekis, S., Orange, J., Poulos, C., Meckley, L. M., Peay, H., Sutphin, J., Hernandez-Trujillo, V. P., & Wasserman, R. L. (2023). Development of a novel shared decision making aid for primary immunodeficiency diseases. Immunotherapy, 15(9), 647-656. https://doi.org/10.2217/imt-2022-0193
Aim: To describe development of a shared decision making (SDM) aid in treating primary immunodeficiency diseases (PID) with immunoglobulin replacement therapy (IGRT). Materials & methods: Expert engagement and qualitative formative research informed development. IGRT administration features were prioritized using object-case best-worst scaling (BWS) methodology. The aid was assessed by US adults self-reporting PID and revised following interviews/mock treatment-choice discussions with immunologists. Results: Patients participating in interviews (n = 19) and mock treatment-choice discussions (n = 5) deemed the aid useful/accessible and supported the utility of BWS, with content and BWS exercises refined following participant feedback. Conclusion: Formative research led to an improved SDM aid/BWS exercise, and illustrated how the aid may improve treatment decision making. The aid may help less-experienced patients and facilitate efficient SDM.
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