Developing and testing of patient decision aids for the use of healthcare providers in facilitating advance care planning for patients with dementia

Promoting advance care planning (ACP) in long-term care facilities presents significant challenges, particularly for people with dementia (PWD) and their families in making informed decisions. To address this, patient decision aids (PDAs) specifically tailored to end-of-life medical decisions for this population is needed. This study aimed to develop PDAs to aid healthcare providers in discussing ACP for end-of-life care decisions with PWD and their families. A mixed-method design was used to develop the PDAs through three sequential steps. First, design of the PDAs: This involved creating a brochure, a checklist, and six videos informed by existing ACP regulations and literature evidence. The initial design was evaluated for content validity by experts. Second, re-validation: The PDAs underwent re-validation using the Patient Education Materials Assessment Tool. This included alpha testing to assess the prototype and beta testing to evaluate understandability and actionability. Third, field testing: The Preparation for Decision Making Scale was used to measure readiness for making end-of-life care decision in a field test setting. Alpha testing of the PDAs demonstrated a high reliability score ranging from 0.85 to 1. In beta testing for understandability and actionability, the reliability scores were 0.91–0.97 and 0.96–1, respectively. In a clinical setting where the PDAs was tested, all participants reported being well-prepared for decision-making and found the PDAs beneficial in facilitating ACP. The developed PDAs exhibits strong understandability, actionability, and effectiveness in preparing service users for decision-making. They are valuable tools for healthcare providers to support end-of-life care decisions for PWD and their families.