Background: Although patient portals are widely used for health promotion, little is known about the use of palliative care and end-of-life (PCEOL) portal tools available for patients and caregivers.
Objective: This study aims to identify and assess the user perspectives of PCEOL portal tools available to patients and caregivers described and evaluated in the literature.
Methods: We performed a scoping review of the academic literature directed by the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-analyses) extension for Scoping Review and searched three databases. Sources were included if they reported the development or testing of a feature, resource, tool, or intervention; focused on at least one PCEOL domain defined by the National Coalition for Hospice and Palliative Care; targeted adults with serious illness or caregivers; and were offered via a patient portal tethered to an electronic medical record. We independently screened the titles and abstracts (n=796) for eligibility. Full-text (84/796, 10.6%) sources were reviewed. We abstracted descriptions of the portal tool name, content, targeted population, and reported user acceptability for each tool from included sources (n=19).
Results: In total, 19 articles describing 12 tools were included, addressing the following PCEOL domains: ethical or legal (n=5), physical (n=5), and psychological or psychiatric (n=2). No tools for bereavement or hospice care were identified. Studies have reported high acceptability of tools among users; however, few sources commented on usability among older adults.
Conclusions: PCEOL patient portal tools are understudied. As medical care increasingly moves toward virtual platforms, future research should investigate the usability and acceptability of PCEOL patient portal resources and evaluate their impact on health outcomes.
Keywords: digital health; electronic health record; end-of-life care; palliative care; patient portal.
©M Pilar Ingle, Cristina Valdovinos, Kelsey L Ford, Shou Zhou, Sheana Bull, Starlynne Gornail, Xuhong Zhang, Susan Moore, Jennifer Portz. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 16.09.2021.