FRI401 Co-creating Patient-facing Materials For Primary Ovarian Insufficiency

Disclosure: I.R. McDonald: None. E.S. Blocker: None. E.A. Weyman: None. C.K. Welt: None. A.A. Dwyer: None. Evidence suggests people with POI have unmet health and information needs that contribute to impaired health-related quality of life (HR-QoL). Co-creation can produce high-quality patient-facing educational materials that respond to patient-identified needs and overcome healthcare disparities. Our goal was to co-create patient-facing materials that respond to unmet health and informational needs, mitigate health disparities, and improve HR-QoL for people with POI. The project had three sequential steps. First, we synthesized the state of the science on HR-QoL, care, and management of POI. Next, we conducted a systematic scoping review to identify “best practices” for co-creating patient-facing materials. Last, we employed co-creation best practices, patient engagement, and an iterative “design thinking” process to co-create and evaluate patient-facing POI materials. The HR-QoL scoping review identified three inter-related themes related to impaired HR-QoL in POI (diagnostic odyssey, isolation & stigma, and ego integrity) along with sub-themes of decreased sexual function, altered body image, psychological vulnerability and catastrophizing. The co-creation scoping review identified 6 best practices for co-creation: (1) begin with a review of the literature, (2) utilize a framework to inform the process, (3) involve clinical and patient experts from the beginning, (4) engage diverse perspectives, (5) ensure patients have the final decision, and (6) employ validated evaluation tools. Informed by the synthesis of care and management of POI, we partnered with patients to create concise patient-facing materials responding to unmet health and informational needs of people with POI. Patients engaged in co-creation using the “design thinking” process: empathize, define the question, ideate/brainstorm, iterate prototypes (n=4), and testing using the “gold standard” Patient Education Materials Assessment Tool (PEMAT). The final 2-page patient-facing materials were evaluated using 7 readability algorithms revealing a consensus reading level of 7(th) grade (i.e., fairly easy to read for an 11-13 year-old). The patient partners rated the materials as highly acceptable and actionable. The online PEMAT evaluation is underway in collaboration with POI patient organizations. We envision such co-creation will produce understandable and actionable materials (i.e., all PEMAT domain scores >80%). This project may serve as a roadmap for healthcare organizations and patients to collaborate and surmount health disparities and improve care for other health conditions. Presentation: Friday, June 16, 2023