RESUMEN
BACKGROUND: People with cystic fibrosis (CF) are increasingly considering their reproductive goals. We developed MyVoice:CF, a web-based patient-centered reproductive decision support tool and assessed its implementation in CF care. METHODS: We conducted a feasibility trial among 18-44-year-old women with CF and multidisciplinary CF providers. Prior to CF clinic visit, patient participants completed a baseline survey, used MyVoice:CF, and assessed acceptability, appropriateness, and usability. After clinic, participants rated impact on reproductive health communication. At 3 months post-use, participants assessed impact on reproductive health outcomes. Provider participants completed a survey and focus group regarding MyVoice:CF feasibility/implementation. We assessed outcomes descriptively. We compared MyVoice:CF's impact on outcomes from baseline to follow-up using McNemar's and Wilcoxon signed rank tests as appropriate. RESULTS: Forty-three patient participants completed baseline surveys and 40 rated MyVoice:CF's feasibility; 10 providers participated. Patient participants rated MyVoice:CF's acceptability as 4.48±0.50 out of 5, appropriateness as 4.61±0.48 out of 5, and usability as 82.25±11.02 ('A'/excellent). After MyVoice:CF use, participants reported improved reproductive health communication self-efficacy vs. baseline (3.54±1.17vs.3.95±0.93, p<0.001). At baseline, 36% of participants reported any discussion of reproductive goals/plans with their CF team in the past year compared to 59% after first visit post-MyVoice:CF use (p=0.049). Provider participants similarly rated MyVoice:CF as feasible and reported no negative impacts on clinic flow after implementation. CONCLUSIONS: MyVoice:CF is acceptable, appropriate, and usable for those with CF. Preliminary effectiveness evaluation suggests that MyVoice:CF improves self-efficacy in and frequency of reproductive health communication. Future studies should further assess MyVoice:CF's impact on reproductive health communication and outcomes.
RESUMEN
Objective: To develop a patient-centered, web-based decision aid to support informed and value-concordant decision making among Medicaid enrollees considering tubal sterilization. Methods: We used the Ottawa Decision Support Framework and the International Patient Decision Aids Standards (IPDAS) to guide systematic development of our decision aid. We interviewed 15 obstetrician-gynecologists and 40 women, who had considered or were considering tubal sterilization. A Steering Committee-comprising healthcare providers, social scientists, reproductive health and justice advocates, and people with lived experience-provided feedback and direction. We developed English and Spanish prototypes, which were beta tested with 24 women. Results: The resulting web-based My Decision/Mi Decisión tool (English/Spanish) includes written and video information about tubal sterilization procedures; an interactive table of contraception options; values clarification exercises; reflection and deliberation; knowledge checks; and a summary report to share with one's provider. Users found the decision aid to be informative, engaging, easy to use, and helpful in informing contraception decision making. Conclusion: My Decision/Mi Decisión is a scalable tool that could be implemented widely to support informed decision making about tubal sterilization. Innovation: This is a novel and timely web-based decision tool for tubal sterilization, when demand for permanent contraception is rapidly increasing post-Dobbs. While designed for Medicaid enrollees, further investigation will explore more generalized use.
RESUMEN
Objective: More people with cystic fibrosis (pwCF) are reaching adulthood and considering their reproductive futures. Unfortunately, many pwCF report gaps in their reproductive healthcare. We describe measures of stakeholder engagement in developing a reproductive goals decision aid for women with CF called MyVoice:CF. Methods: Stakeholders reviewed the content, design, and usability of the tool, which was informed by prior research related to CF family planning experiences and preferences as well as a conceptual understanding of reproductive decision making. We evaluated stakeholder engagement via process measures and outcomes of stakeholder involvement. We collected data via recorded stakeholder recommendations and surveys. Results: Fourteen stakeholders participated and the majority described their role on the project as "collaborator", "advisor", or "expert." Most felt their expectations for the project were met or exceeded, that they had contributed significantly, and that they received sufficient and frequent information about the process. All stakeholders provided recommen-dations and clarified aims for a CF-specific family planning tool, including its content and focus on facilitating shared decision making. Discussion: Utilizing meaningful stakeholder contributions, we developed MyVoice:CF, a novel web-based decision aid to help women with CF engage in shared decision-making regarding their reproductive goals. Practical Value: Our findings from working with stakeholders for MyVoice:CF indicate that disease-specific reproductive health resources can and should be designed with input from individuals in the relevant communities.
