“Changeons les Règles!” development and feasibility testing of an encounter decision aid for menstrual management in adolescents and young adults with developmental disabilities

Objectives: To report the developing process and acceptability testing of a decision aid designed for adolescents and young adults with developmental disabilities, focusing on treatment options for menstrual management. Methods: We developed a paper-based encounter decision aid to support shared decision-making about treatment options for menstrual management for adolescents and young adults with developmental disabilities. This tool was designed to be both evidence-based and user-centered. We conducted a feasibility study to assess its acceptability. Results: The decision aid was used during consultations with 18 adolescents and young adults with developmental disabilities and their caregivers. Participants reported high levels of acceptability and found the tool helpful in facilitating decision-making. They particularly valued the ability to compare treatment options side by side. The tool also promoted meaningful conversations between patients and clinicians. Conclusions: The decision aid was well-accepted and successfully facilitated the discussion about menstrual management options between patients and clinicians. Further research is needed to evaluate its long-term impact on decision making outcomes and patient satisfaction. Innovation: This innovative tool may support shared decision-making for adolescents and young adults with developmental disabilities and their caregivers, and provide additional insight on how to engage individuals with developmental disabilities in healthcare decisions.