Development of an Advance Care Planning Portal-Based Tool for Community-Dwelling Persons Living With Cognitive Impairment: The ACPVoice Tool

Abstract

Background: Patient portals can be an innovative and efficient way to engage patients in advance care planning (ACP). However, comprehension and judgment in older adults with cognitive impairment presents several barriers and challenges to engaging in new technology. Our objective was to develop an ACP portal-based tool (ACPVoice) for community-dwelling persons living with cognitive impairment (PLCI) by engaging end-users in the design process. Methods: Two rounds of cognitive interviews were conducted to identify and resolve cognitive issues related to comprehension, judgment, response, and to assess content validity. Purposive sampling was used with the goal of enrolling 15 different participants (five with mild cognitive impairment and five dyads (those with mild dementia and their care partner) in each round to assess respondents’ understanding of questions related to advance care planning to be administered via the patient portal. Results: Twenty PLCI (mean age 78.4, 10 females [50%]) and ten care partners (mean age 60.9, 9 females [90%]) completed cognitive interviews between May 2021 and October 2021. The mean Mini-Mental State Examination score for PLCI was 25.6 (SD 2.6). Unclear wording and undefined vague and/or unfamiliar terms were the major issues identified. Revisions to item wording, response options, and instructions were made to improve question comprehension and response as well as navigational ease. Conclusion: Minor changes to the wording, format, and response options substantially improved respondents’ ability to interpret the item content of the ACPVoice tool. Dissemination and implementation of the ACPVoice tool could help to engage community-dwelling PLCI in ACP discussions.