Epic-Fail: ICD Education Through a Patient Portal in Highly Diverse, Safety-net Population

{"title":"Epic-Fail: ICD Education Through a Patient Portal in Highly Diverse, Safety-net Population","authors":"Jingwen Zhang MD,&nbsp;Melanie Sulistio MD FACC FAHA,&nbsp;Kristin Alvarez PharmD,&nbsp;Sarah Godfrey MD MPH,&nbsp;Nakul Patel BS,&nbsp;Carla Khalaf McStay MD MS","doi":"10.1016/j.jpainsymman.2025.02.030","DOIUrl":null,"url":null,"abstract":"<div><h3>Outcomes</h3><div>1. Participants will be able to evaluate how improving patient knowledge regarding their implantable cardioverter-defibrillator (ICD) impacts their ability to engage with discussions regarding end-of-life preferences and shock status.</div><div>2. Participants will be able to analyze common barriers to engaging with portal-based education for diverse populations and outline strategies to overcome and engage despite those barriers.</div></div><div><h3>Key Message</h3><div>In a racially and socioeconomically diverse population of outpatients with ICDs that were sent patient-portal based education, few patients independently engaged with the education. However, individualized interventions led to greater rates of engagement in those with barriers to care. Of the patients who completed this education, most reported gaining new insight into ICD function or end-of-life choices.</div></div><div><h3>Abstract</h3><div>In patients with implantable cardioverter-defibrillators (ICDs), knowledge deficiencies regarding ICDs reduce their willingness to discuss end-of-life preferences and include racial/gender disparities.(1-3) Patient portals present opportunities for large-scale education, advanced care planning (ACP) and improving health outcomes, but utilization disparities are poorly understood.(4-6)</div></div><div><h3>Objectives</h3><div>We evaluated perceptions of ICDs and end-of-life preferences among a diverse outpatient population after completing video-based education disseminated via patient portal. We evaluated how this group utilized the portal for education.</div></div><div><h3>Methods</h3><div>An ICD educational video and online survey (English and Spanish) were sent via patient portal to outpatients with both ICDs and activated patient portals at a large, diverse, safety-net system. The study was piloted in 25 patients, with initial instructional phone calls, and later released to the remaining 1,133 patients without instructional calls. Phone surveys about ICD knowledge, attitudes and end-of-life preferences were conducted for those who watched the video.(7) Results The video was distributed to 1,158 patients (45.5% Black, 26.5% Hispanic White, 24.0% non-Hispanic White). Only 22 (2%) completed the online survey (40.9% non-Hispanic White, 36.4% Black, 22.7% Hispanic White). Only 4 (out of 207) Spanish-speakers engaged and required instructional calls. Nineteen (86.4%) patients had never been asked about end-of-life preferences before and 9 (40.9%) were first-time learners that they could deactivate their ICD.</div></div><div><h3>Conclusion</h3><div>Despite patient portals allowing for large-scale education, we show engagement was minimal for a diverse population with active accounts. Accounts may have been activated by surrogates with minimal use. Language may be a barrier, requiring more personalized intervention. However, those who engaged demonstrated benefit. Portal-based resources may assist clinicians who face time constraints, as they can initiate ACP and direct patients to such resources for further learning. For education regarding end-of-life care and ICDs, further work is needed to understand and address the needs of these populations.</div></div><div><h3>References</h3><div>1. Berlacher M, Abousaab C, Chen C, et al. ICD knowledge and attitudes at end of life in a diverse and vulnerable patient population. Journal of Health Care for the Poor and Underserved 2022;33(4):1793-1808. doi: 10.1353/hpu.2022.0138. 2. McEvedy SM, Cameron J, Lugg E, et al. Implantable cardioverter defibrillator knowledge and end-of-life device deactivation: A cross-sectional survey. Palliat Med. 2018 Jan;32(1):156-163. doi: 10.1177/0269216317718438. 3. WalkerDM, Hefner JL, Fareed N, Huerta TR, McAlearney AS. Exploring the Digital Divide: Age and Race Disparities in Use of an Inpatient Portal. Telemed J E Health. 2020 May;26(5):603-613. doi: 10.1089/tmj.2019.0065. 4. Clarke MA, Lyden ER, Ma J, et al. Sociodemographic Differences and Factors Affecting Patient Portal Utilization. J Racial Ethn Health Disparities. 2021;8(4):879-891. doi: 10.1007/s40615-020-00846-z. 5. Johnson AM, Brimhall AS, Johnson ET, et al. A systematic review of the effectiveness of patient education through patient portals. JAMIA Open. 2023;6(1):ooac085. doi: 10.1093/jamiaopen/ooac085. 6. Jordan SR, Brungardt A, Phimphasone-Brady P, Lum HD. Patient Perspectives on Advance Care Planning via a Patient Portal. Am J Hosp Palliat Care. 2019;36(8):682-687. doi: 10.1177/1049909119832820. 7. Dodson JA, Fried TR, VanNess PH, Goldstein NE, Lampert R. Patient preferences for deactivation of implantable cardioverter-defibrillators. JAMA Intern Med. 2013;173(5):377-9. doi: 10.1001/jamainternmed.2013.1883.</div></div>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":"69 5","pages":"Pages e424-e425"},"PeriodicalIF":3.2000,"publicationDate":"2025-04-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of pain and symptom management","FirstCategoryId":"3","ListUrlMain":"https://www.sciencedirect.com/science/article/pii/S0885392425000909","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"CLINICAL NEUROLOGY","Score":null,"Total":0}