Person centered care for primary ovarian insufficiency: Developing and testing patient-facing materials co-created with patients

Elizabeth S Blocker¹Isabella R McDonald¹Elizabeth A Weyman¹Dana L Jarvis²Joni Bryce²Corrine K Welt^3,4Andrew A. Dwyer^1,3*

• ¹William F. Connell School of Nursing, Boston College, Chestnut Hill, United States
• ²Patient Advocate, N/A, United States
• ³Massachusetts General Hospital – Harvard Center for Reproductive Medicine, Boston, MA, United States
• ⁴Division of Endocrinology, Metabolism & Diabetes, University of Utah, Salt Lake City, UT, United States

Objective: We aimed to enhance person-centered care for primary ovarian insufficiency (POI) by co-creating patient-facing educational materials (PEM) with patients. We then evaluated understandability, actionability, and acceptability of the co-created PEM. Design: Healthcare professionals spanning reproductive endocrinology, nursing, and genetic counseling partnered with patients to co-create PEM using the iterative ‘design thinking’ (human-centered design) process. Validated algorithms (n=8) were employed to determine PEM readability prior to evaluation. Individuals with POI were recruited from patient organizations to complete the online evaluation of PEM. Participants completed health literacy/numeracy instruments, Patient Education Materials Assessment Tool for print materials (PEMAT-P), and provided open-ended qualitative feedback. Scores >80% in PEMAT-P domains were considered ‘high quality’. Results: Co-creation involved three iterative rounds of development. Readability algorithms indicated PEM were ‘fairly easy to read’ for 11- to 13-year-olds (i.e., 7th grade reading level). Thirty patients completed the online evaluation (36.96.4 years-old). All PEMAT-P domains exceeded the ‘high quality’ threshold: content (82%), word choice/style (89%), use of numbers (91%), organization (93%), layout/design (90%), use of visual aids (83%), and actionability (85%). PEMAT-P scores neither differed according to educational attainment (p=0.94) nor health literacy/numeracy (p=0.61). Qualitative feedback informed further PEM refinement prior to widespread dissemination and clinical use. Conclusions: Engaging patients with POI in co-creation produced PEM that were acceptable, understandable, and actionable. Co-creation is a low-cost engagement process supporting person-centered care. The process described herein may serve as a “roadmap” guiding PEM development for other reproductive conditions.