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. 2023 Jun;15(9):647-656.
doi: 10.2217/imt-2022-0193. Epub 2023 May 9.

Development of a novel shared decision making aid for primary immunodeficiency diseases

Spiros Tzivelekis  1 , Jordan Orange  2 , Christine Poulos  3 , Lisa M Meckley  1 , Holly Peay  4 , Jessie Sutphin  5   3 , Vivian P Hernandez-Trujillo  6 , Richard L Wasserman  7
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Free article

Development of a novel shared decision making aid for primary immunodeficiency diseases

Spiros Tzivelekis et al. Immunotherapy. 2023 Jun.
Free article

Abstract

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.

Keywords: best–worst scaling methodology; decision aid; decision support aid; immunoglobulin replacement therapy; inborn errors of immunity; patient preference; primary immunodeficiency diseases; shared decision making.

Plain language summary

Shared decision making and developing a decision aid Shared decision making happens when patients and doctors work together to choose treatment options based on a patient's concerns, preferences, goals and values, as well as medical information. The aim of this project was to develop a decision aid to help patients with primary immunodeficiency diseases (PID), in which part of the body's immune system is missing or doesn't function correctly. This will allow patients to better understand and communicate with the healthcare team on their preferences about immunoglobulin treatments, which fight infection by boosting antibody (protein) levels in the blood. The authors talked to experts and reviewed existing information to decide what treatment features the aid should consider. Patients with PID then tested the aid, and changes were made based on their feedback. Doctors specializing in treating PID also provided their feedback. The final aid was judged to be helpful and easy to use by the participants. With further research, this aid could be used to help inexperienced patients better understand what immunoglobulin treatment features are most important to them, and support shared decision-making between patients and their doctors.

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