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

IF 3.2 2区医学 Q2 CLINICAL NEUROLOGY

Journal of pain and symptom management Pub Date : 2025-04-10 DOI:10.1016/j.jpainsymman.2025.02.030

Jingwen Zhang MD, Melanie Sulistio MD FACC FAHA, Kristin Alvarez PharmD, Sarah Godfrey MD MPH, Nakul Patel BS, Carla Khalaf McStay MD MS

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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. 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引用次数: 0

Outcomes

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.

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.

Key Message

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.

Abstract

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)

Objectives

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.

Methods

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.

Conclusion

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.

References

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.

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史诗般的失败：通过高度多样化的患者门户网站进行ICD教育，安全网人口

Outcomes1。参与者将能够评估提高患者关于其植入式心脏转复除颤器（ICD）的知识如何影响他们参与有关临终偏好和休克状态的讨论的能力。参与者将能够分析针对不同人群开展门户教育的常见障碍，并概述克服和参与这些障碍的战略。在种族和社会经济多样化的icd门诊患者中，接受了基于患者门户的教育，很少有患者独立参与教育。然而，个性化的干预措施提高了那些有护理障碍的人的参与率。在完成这种教育的患者中，大多数报告对ICD功能或临终选择有了新的认识。植入式心律转导除颤器（icd）患者，关于icd的知识不足降低了他们讨论临终偏好的意愿，并包括种族/性别差异。（1-3）患者门户网站为大规模教育、高级护理计划（ACP）和改善健康结果提供了机会。（4-6）目的在完成通过患者门户网站传播的基于视频的教育后，我们评估了不同门诊人群对icd和临终偏好的看法。我们评估了这个群体如何利用门户网站进行教育。方法将ICD教育视频和在线调查（英语和西班牙语）通过患者门户网站发送给患有ICD的门诊患者和激活的患者门户网站。这项研究在25名患者中进行了试点，最初有指导性电话，后来在没有指导性电话的情况下向其余1133名患者开放。(7)结果共发放了1158例患者，其中黑人占45.5%，西班牙裔白人占26.5%，非西班牙裔白人占24.0%。只有22人（2%）完成了在线调查（40.9%非西班牙裔白人，36.4%黑人，22.7%西班牙裔白人）。207名说西班牙语的学生中，只有4人参与并要求教学电话。19例（86.4%）患者以前从未被问及临终偏好，9例（40.9%）患者是第一次学习他们可以停用ICD。结论：尽管患者门户网站允许大规模教育，但我们发现，对于拥有活跃账户的多样化人群，参与程度最低。账户可能是由代理人激活的，使用最少。语言可能是一个障碍，需要更个性化的干预。然而，那些参与的人表现出了好处。基于门户的资源可以帮助面临时间限制的临床医生，因为他们可以启动ACP并指导患者到这些资源进行进一步学习。关于临终关怀和icd的教育，需要进一步的工作来了解和解决这些人群的需求。参考文献1。张建军，陈建军，陈建军，等。不同和弱势患者群体生命末期的ICD知识和态度。中国卫生保健杂志（英文版）；2010;33(4):1793-1808。doi: 10.1353 / hpu.2022.0138。2. McEvedy SM, Cameron J, Lugg E，等。植入式心律转复除颤器知识和终末期装置停用：一项横断面调查。中华医学杂志，2018,32(1):156-163。doi: 10.1177 / 0269216317718438。3. WalkerDM, Hefner JL, Fareed N, Huerta TR, mccalearney AS。探索数字鸿沟：使用住院病人门户的年龄和种族差异。中华电信杂志，2020;26(5):603-613。doi: 10.1089 / tmj.2019.0065。4. 李建军，李建军，李建军，等。社会人口统计学差异及影响患者门户网站使用的因素。[J] .中华医学会心理医学杂志，2011;8(4):879-891。doi: 10.1007 / s40615 - 020 - 00846 - z。5. Johnson AM, Brimhall AS, Johnson ET，等。通过患者门户对患者教育的有效性进行系统回顾。[j] .吉林大学学报（自然科学版）；2023;6(1):ooac085。doi: 10.1093 / jamiaopen / ooac085。6. Jordan SR, Brungardt A, Phimphasone-Brady P, Lum HD。通过患者门户网站对预先护理计划的患者观点。中华临终关怀杂志，2019;36(8):682-687。doi: 10.1177 / 1049909119832820。7. Dodson JA, Fried TR, VanNess PH, Goldstein NE, Lampert R.植入式心律转复除颤器失活的患者偏好。中华医学杂志，2013;17(5):377-9。doi: 10.1001 / jamainternmed.2013.1883。

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来源期刊

Journal of pain and symptom management 医学-临床神经学

CiteScore

8.90

自引率

6.40%

发文量

821

审稿时长

26 days

期刊介绍： The Journal of Pain and Symptom Management is an internationally respected, peer-reviewed journal and serves an interdisciplinary audience of professionals by providing a forum for the publication of the latest clinical research and best practices related to the relief of illness burden among patients afflicted with serious or life-threatening illness.