Development and Pilot Testing of a Patient-Centered Reproductive Decision Aid for Pregnancy-Capable People With Rheumatic Diseases.

Abstract

Objective: Although women with rheumatic and musculoskeletal diseases (RMDs) are at an elevated risk for adverse pregnancy and perinatal outcomes, some report that they lack access to resources that support informed reproductive decision-making. We developed MyVoice:Rheum, a web-based decision aid to support women with RMDs in reproductive decision-making. We conducted a pilot trial to assess feasibility and acceptability of MyVoice:Rheum and to assess its preliminary effectiveness compared to a freely available online pamphlet about reproductive and RMDs.

Methods: Using a parallel-arm randomized pilot trial design, we assigned women aged 18 to 44 years with RMDs in a 3:1 ratio to receive either MyVoice:Rheum or the control pamphlet immediately before a rheumatology clinical encounter. Quantitative and qualitative measures of feasibility, acceptability, and usability were assessed among MyVoice:Rheum users. We evaluated the preliminary effectiveness of MyVoice:Rheum in prompting family planning discussions as compared to pamphlet users, as well as its effects on users' reproductive knowledge and/or communication self-efficacy with rheumatologists.

Results: We enrolled MyVoice:Rheum users (n = 31) and controls (n = 9) in the pilot study. MyVoice:Rheum users scored the tool as feasible, acceptable, and easy to use. Approximately 61% of MyVoice:Rheum users and 44% of controls had family planning discussions with their rheumatologists. MyVoice:Rheum users demonstrated increases in self-efficacy and knowledge scores after the intervention.

Conclusion: In pilot testing, MyVoice:Rheum was feasible, acceptable, and usable to women with RMDs. Preliminary findings suggest that MyVoice:Rheum may increase family planning discussions in the rheumatology context and augment patients' reproductive knowledge and self-efficacy; these findings should be confirmed in a future full-scale study.