Background: Cardiopulmonary resuscitation (CPR) is an intervention used in cases of cardiac arrest to revive patients whose heart has stopped. Because cardiac arrest can have potentially devastating outcomes such as severe neurological deficits even if CPR is performed, patients must be involved in determining in advance if they want CPR in the case of an unexpected arrest. Shared decision making (SDM) facilitates discussions about goals of care regarding CPR in intensive care units (ICUs). Patient decision aids (DAs) are proven to support the implementation of SDM. Many patient DAs about CPR exist, but they are not universally implemented in ICUs in part due to lack of context and cultural adaptation. Adaptation to local context is an important phase of implementing any type of knowledge tool such as patient DAs. User-centered design supported by a wiki platform to perform rapid prototyping has previously been successful in creating knowledge tools adapted to the needs of patients and health professionals (eg, asthma action plans). This project aims to explore how user-centered design and a wiki platform can support the adaptation of an existing DA for CPR to the local context.
Objective: The primary objective is to use an existing DA about CPR to create a wiki-based DA that is adapted to the context of a single ICU and tailorable to individual patient's risk factors while employing user-centered design. The secondary objective is to document the use of a wiki platform for the adaptation of patient DAs.
Methods: This study will be conducted in a mixed surgical and medical ICU at Hôtel-Dieu de Lévis, Quebec, Canada. We plan to involve all 5 intensivists and recruit at least 20 alert and oriented patients admitted to the ICU and their family members if available. In the first phase of this study, we will observe 3 weeks of daily interactions between patients, families, intensivists, and other allied health professionals. We will specifically observe 5 dyads of attending intensivists and alert and oriented patients discussing goals of care concerning CPR to understand how a patient DA could support this decision. We will also conduct individual interviews with the 5 intensivists to identify their needs concerning the implementation of a DA. In the second phase of the study, we will build a first prototype based on the needs identified in Phase I. We will start by translating an existing DA entitled "Cardiopulmonary resuscitation: a decision aid for patients and their families." We will then adapt this tool to the needs we identified in Phase I and archive this first prototype in a wiki. Building on the wiki's programming architecture, we intend to integrate the Good Outcome Following Attempted Resuscitation risk calculator into our DA to determine personal risks and benefits of CPR for each patient. We will then present the first prototype to 5 new patient-intensivist dyads. Feedback about content and visual presentation will be collected from the intensivists through short interviews while longer interviews will be conducted with patients and their family members to inform the visual design and content of the next prototype. After each rapid prototyping cycle, 2 researchers will perform qualitative content analysis of data collected through interviews and direct observations. We will attempt to solve all content and visual design issues identified before moving to the next round of prototyping. In all, we will conduct 3 prototyping cycles with a total of 15 patient-intensivist dyads.
Results: We expect to develop a multimedia wiki-based DA to support goals of care discussions about CPR adapted to the local needs of patients, their family members, and intensivists and tailorable to individual patient risk factors. The final version of the DA as well as the development process will be housed in an open-access wiki and free to be adapted and used in other contexts.
Conclusions: This study will shed new light on the development of DAs adapted to local context and tailorable to individual patient risk factors employing user-centered design and a wiki to support rapid prototyping of content and visual design issues.
Keywords: cardiopulmonary resuscitation; end-of-life planning; goals of care discussions; intensive care medicine; medical informatics; shared decision making; user-centered design; wikis.