Objective: To explore patients’ views of the MS Option Grid (OG) TM decision aid for usability and feasibility for Multiple Sclerosis (MS) patients who are using shared decision making to facilitate preference-sensitive decisions about Disease Modifying Therapy (DMT).
Method: Qualitative data were collected using 8 semi-structured interview questions derived from the OG User Testing Guide. Interviews were conducted at two study sites: (1) a community hospital in Concord, New Hampshire and an academic medical center in St. Louis, MO. Interviews aimed to assess patients’ overall reaction to using the OGs, specific aspects of the user experience (e.g. readability, format, content, etc.) and patient opinions about whether the integration of OGs into visits with MS clinicians would be feasible and helpful to making better DMT selections. Following informed consent, interviews were de-identified, audio recorded and saved to a secure and encrypted computer system. A professional transcriptionist created written transcripts of the interviews. A thematic analysis of the transcripts was conducted by the investigator. A codebook was developed through joint consensus discussion between the investigator and three additional coders. Each interview as dual coded by the investigator and an additional coder and discrepancies resolved via consensus conference. NVivo12 software was used for coding and categorizing themes.
Results: Twenty-three interviews were completed with people with MS ages 18 to 70 years old (11 in NH and 12 in MO). Nine themes emerged from the analysis: (1) OG was informative to facilitate conversations with clinicians; (2) OG increased knowledge of DMT options; (3) including cost information would facilitate higher quality decisions; (4) OG is easy to read and understand; (5) side effect information should have a higher priority of presentation on OGs; (6) OGs increased knowledge of side effects and lab test requirements for DMTs; (7) formatting recommendations; (8) format of OG for oral DMTs preferred over that of OG for injectable DMT; and (9) recommendations about transparency of data sources and researchers involved in OG development.
Conclusion: We successfully completed a qualitative user testing study of 23 adults with MS across two geographic locations. Overall findings suggest that the OGs were perceived to be usable, easy to understand, and helpful to facilitate shared decision making for DMT selection. We also identified areas for improvement that will guide further modifications to the MS OG decision aids prior to publication and can also inform the growing body of knowledge regarding the development and characteristics of high quality OG decision aids.