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

Area of Science:

• Immunology
• Patient Care

Background:

• Primary immunodeficiency diseases (PID) require complex treatment decisions.
• Immunoglobulin replacement therapy (IGRT) is a common treatment for PID.
• Shared decision-making (SDM) is crucial for optimizing patient outcomes.

Purpose of the Study:

• To describe the development of an SDM aid for PID treatment using IGRT.
• To refine the SDM aid through expert and patient feedback.

Main Methods:

• Expert engagement and qualitative formative research guided aid development.
• Object-case best-worst scaling (BWS) prioritized IGRT administration features.
• The aid was assessed by US adults with PID and immunologists.

Main Results:

• Patients found the SDM aid useful and accessible.
• Best-worst scaling (BWS) methodology was supported by participants.
• Participant feedback led to refinements in aid content and BWS exercises.

Conclusions:

• Formative research successfully improved an SDM aid and BWS exercise for PID.
• The developed aid can enhance treatment decision-making for PID patients on IGRT.
• This tool may particularly benefit less-experienced patients and streamline SDM.