University of Pittsburgh Pittsburgh, PA, United States
Mehret Birru Talabi1, Traci Kazmerski2, Raelynn O'Leary3, Ashley Deal3, Megan Clowse4, Oilvia Stransky5 and Sonya Borrero5, 1University of Pittsburgh, Pittsburgh, PA, 2Children's Hospital of Pittsburgh, Pittsburgh, 3Carnegie Mellon University School of Design, Pittsburgh, 4Duke University, Durham, NC, 5University of Pittsburgh, Pittsburgh
Background/Purpose: Given the potential for pregnancy-associated mortality and morbidity, the question of whether and/or when to become pregnant is often a profoundly important decision for people with rheumatic diseases (RMDs). However, many people with RMDs struggle to make informed decisions related to pregnancy because they lack access to targeted, relevant, and accurate information. To meet patients' information needs and augment family planning care in the rheumatology context, our collaborative team of rheumatologists, women's health experts, and designers developed a web-based, patient-facing decision aid called MyVoice:Rheum.
Methods: We followed best practices for decision aid development as described by the International Patient Decision Aid Standards, and organized the MyVoice:Rheum by Self-Determination Theory domains of patient autonomy (e.g., choice), competence (e.g., knowledge generation), and relatedness (e.g., confidence to communicate with clinicians). Consistent with best practices, we convened a stakeholder panel of reproductive-age women with RMDs to provide feedback throughout about the functionality, design, and content of MyVoice:Rheum prototypes. Content for the tool was abstracted from consensus recommendations about pregnancy, fertility, contraception, and medication safety during pregnancy and lactation from the American College of Rheumatology Guide for the Management of Reproductive Health in Rheumatic and Musculoskeletal Diseases. Findings from our prior qualitative studies with patients and rheumatologists also informed content regarding abortion care, parenting, and patient-provider communication. To assess usability, MyVoice:Rheum designers led one-on-one beta-testing sessions with women with RMDs, who were asked to think aloud about their reactions and observations while navigating the tool.
Results: A prototype of the MyVoice:Rheum decision aid was finalized in September 2021.MyVoice:Rheum users are first asked to indicate their RMD diagnosis(-es). Users are next presented with information that is both disease-specific and general. Interactive exercises support reproductive autonomy by allowing users to compare and contrast options for family formation and to freely navigate the tool. A digital notepad is provided to record thoughts and questions to support knowledge generation and competence. When users complete MyVoice:Rheum, a personalized summary sheet is generated that includes facts about the topics that the user perused, and sample questions to prompt family planning conversations with rheumatologists and build communication self-efficacy. Our beta testing results found that users (N=9) either "strongly agreed" or "agreed" on five-item Likert scales that the tool provided salient, trustworthy, and clear information about family planning and RMDs.
Conclusion: The MyVoice:Rheum decision aid is currently undergoing pilot testing to assess its feasibility and acceptability among reproductive-age women with RMDs in the rheumatology clinical setting. A future study will evaluate the impact of MyVoice:Rheum on patient-centered and clinical outcomes in the rheumatology clinical care context.
Disclosures: M. Birru Talabi, None; T. Kazmerski, None; R. O'Leary, None; A. Deal, None; M. Clowse, Exagen; O. Stransky, None; S. Borrero, None.
