Partnering with patients and caregivers to improve systemic treatment regimen information.

Abstract

185 Background: Cancer Care Ontario’s Drug Formulary is a web-based drug information resource. Patient information is currently provided as single-drug information sheets, with a limited number of multi-drug regimen information sheets (RIS) for breast and lung cancer treatments. Patients identified a need to create additional, high-quality, “user-friendly” RIS. Objectives of this project were to 1) engage patients and caregivers in RIS redesign; 2) evaluate the original vs a redesigned model RIS; and 3) use the model RIS template to create additional RIS across disease sites. Methods: The project team included a patient and family advisor (PFA) and clinical and research experts. This was a qualitative study between August 2017 to May 2019. A focus group (FG) was conducted with 5 PFAs to identify and prioritize drug information needs. A model RIS was designed, incorporating FG input and health literacy best practices. RIS were evaluated through blinded comparative cognitive interviews with 13 PFAs, to assess RIS for usability, understandability and content relevance. Evaluation informed iterative revisions. RIS were also evaluated by clinical and education experts using the Patient Education Materials Assessment Tool (PEMAT). An RIS style guide was developed to inform the creation of future RIS. Ethics approval was obtained from the University of Toronto. Results: The FG prioritized information on regimen details, Dos and Don’ts while on treatment, drug interactions, side effects and contact information. Guidance was provided on simplifying language, highlighting important information and aesthetics. Cognitive interviews consistently reported preference for model RIS over original RIS in most domains. PEMAT scores for original versus model RIS were 64% and 94% respectively (for understandability) and 60% and 82% respectively (for actionability). To date, the style guide has informed the creation of RIS for 10 high-use regimens. Conclusions: PFA and clinician co-design along with health literacy best practices informed measurable improvements in RIS. The style guide will enable the future creation and ongoing evaluation of high-quality RIS to enhance the cancer treatment experience for patients and caregivers.