2 Citations (Scopus)

Abstract

Purpose: To determine whether an advance care planning (ACP) decision-aid could improve communication about end-of-life treatment wishes between patients with amyotrophic lateral sclerosis (ALS) and their clinicians. Methods: Forty-four patients with ALS (>21, English-speaking, without dementia) engaged in ACP using an interactive computer based decision-aid. Before participants completed the intervention, and again three months later, their clinicians reviewed three clinical vignettes, and made treatment decisions (n = 18) for patients. After patients indicated their agreement with the team’s decisions, concordance was calculated. Results: The mean concordance between patient wishes and the clinical team decisions was significantly higher post-intervention (post = 91.9%, 95% CI = 87.8, 96.1, vs. pre = 52.4%, 95% CI = 41.9, 62.9; p <0.001). Clinical team members reported greater confidence that their decisions accurately represented each patient’s wishes post-intervention (mean = 6.5) compared to pre-intervention (mean = 3.3, 1 = low, 10 = high, p <0.001). Patients reported high satisfaction (mean = 26.4, SD = 3.2; 6 = low, 30 = high) and low decisional conflict (mean = 28.8, SD = 8.2; 20 = low, 80 = high) with decisions about end-of-life care, and high satisfaction with the decision-aid (mean = 52.7, SD = 5.7, 20 = low, 60 = high). Patient knowledge regarding ACP increased post-intervention (pre = 47.8% correct responses vs. post = 66.3%; p <0.001) without adversely affecting patient anxiety or self-determination. Conclusion: A computer based ACP decision-aid can significantly improve clinicians’ understanding of ALS patients’ wishes with regard to end-of-life medical care.

Original languageEnglish (US)
Pages (from-to)388-396
Number of pages9
JournalAmyotrophic Lateral Sclerosis and Frontotemporal Degeneration
Volume18
Issue number5-6
DOIs
StatePublished - Jul 3 2017

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Advance Care Planning
Amyotrophic Lateral Sclerosis
Decision Support Techniques
Terminal Care
Personal Autonomy
Dementia
Anxiety

All Science Journal Classification (ASJC) codes

  • Neurology
  • Clinical Neurology

Cite this

Levi, Benjamin ; Simmons, Zachary ; Hanna, Courtney ; Brothers, Allyson ; Lehman, Erik ; Farace, Elana ; Bain, Megan ; Stewart, Renee ; Green, Michael. / Advance care planning for patients with amyotrophic lateral sclerosis. In: Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration. 2017 ; Vol. 18, No. 5-6. pp. 388-396.
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title = "Advance care planning for patients with amyotrophic lateral sclerosis",
abstract = "Purpose: To determine whether an advance care planning (ACP) decision-aid could improve communication about end-of-life treatment wishes between patients with amyotrophic lateral sclerosis (ALS) and their clinicians. Methods: Forty-four patients with ALS (>21, English-speaking, without dementia) engaged in ACP using an interactive computer based decision-aid. Before participants completed the intervention, and again three months later, their clinicians reviewed three clinical vignettes, and made treatment decisions (n = 18) for patients. After patients indicated their agreement with the team’s decisions, concordance was calculated. Results: The mean concordance between patient wishes and the clinical team decisions was significantly higher post-intervention (post = 91.9{\%}, 95{\%} CI = 87.8, 96.1, vs. pre = 52.4{\%}, 95{\%} CI = 41.9, 62.9; p <0.001). Clinical team members reported greater confidence that their decisions accurately represented each patient’s wishes post-intervention (mean = 6.5) compared to pre-intervention (mean = 3.3, 1 = low, 10 = high, p <0.001). Patients reported high satisfaction (mean = 26.4, SD = 3.2; 6 = low, 30 = high) and low decisional conflict (mean = 28.8, SD = 8.2; 20 = low, 80 = high) with decisions about end-of-life care, and high satisfaction with the decision-aid (mean = 52.7, SD = 5.7, 20 = low, 60 = high). Patient knowledge regarding ACP increased post-intervention (pre = 47.8{\%} correct responses vs. post = 66.3{\%}; p <0.001) without adversely affecting patient anxiety or self-determination. Conclusion: A computer based ACP decision-aid can significantly improve clinicians’ understanding of ALS patients’ wishes with regard to end-of-life medical care.",
author = "Benjamin Levi and Zachary Simmons and Courtney Hanna and Allyson Brothers and Erik Lehman and Elana Farace and Megan Bain and Renee Stewart and Michael Green",
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doi = "10.1080/21678421.2017.1285317",
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Advance care planning for patients with amyotrophic lateral sclerosis. / Levi, Benjamin; Simmons, Zachary; Hanna, Courtney; Brothers, Allyson; Lehman, Erik; Farace, Elana; Bain, Megan; Stewart, Renee; Green, Michael.

In: Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, Vol. 18, No. 5-6, 03.07.2017, p. 388-396.

Research output: Contribution to journalArticle

TY - JOUR

T1 - Advance care planning for patients with amyotrophic lateral sclerosis

AU - Levi, Benjamin

AU - Simmons, Zachary

AU - Hanna, Courtney

AU - Brothers, Allyson

AU - Lehman, Erik

AU - Farace, Elana

AU - Bain, Megan

AU - Stewart, Renee

AU - Green, Michael

PY - 2017/7/3

Y1 - 2017/7/3

N2 - Purpose: To determine whether an advance care planning (ACP) decision-aid could improve communication about end-of-life treatment wishes between patients with amyotrophic lateral sclerosis (ALS) and their clinicians. Methods: Forty-four patients with ALS (>21, English-speaking, without dementia) engaged in ACP using an interactive computer based decision-aid. Before participants completed the intervention, and again three months later, their clinicians reviewed three clinical vignettes, and made treatment decisions (n = 18) for patients. After patients indicated their agreement with the team’s decisions, concordance was calculated. Results: The mean concordance between patient wishes and the clinical team decisions was significantly higher post-intervention (post = 91.9%, 95% CI = 87.8, 96.1, vs. pre = 52.4%, 95% CI = 41.9, 62.9; p <0.001). Clinical team members reported greater confidence that their decisions accurately represented each patient’s wishes post-intervention (mean = 6.5) compared to pre-intervention (mean = 3.3, 1 = low, 10 = high, p <0.001). Patients reported high satisfaction (mean = 26.4, SD = 3.2; 6 = low, 30 = high) and low decisional conflict (mean = 28.8, SD = 8.2; 20 = low, 80 = high) with decisions about end-of-life care, and high satisfaction with the decision-aid (mean = 52.7, SD = 5.7, 20 = low, 60 = high). Patient knowledge regarding ACP increased post-intervention (pre = 47.8% correct responses vs. post = 66.3%; p <0.001) without adversely affecting patient anxiety or self-determination. Conclusion: A computer based ACP decision-aid can significantly improve clinicians’ understanding of ALS patients’ wishes with regard to end-of-life medical care.

AB - Purpose: To determine whether an advance care planning (ACP) decision-aid could improve communication about end-of-life treatment wishes between patients with amyotrophic lateral sclerosis (ALS) and their clinicians. Methods: Forty-four patients with ALS (>21, English-speaking, without dementia) engaged in ACP using an interactive computer based decision-aid. Before participants completed the intervention, and again three months later, their clinicians reviewed three clinical vignettes, and made treatment decisions (n = 18) for patients. After patients indicated their agreement with the team’s decisions, concordance was calculated. Results: The mean concordance between patient wishes and the clinical team decisions was significantly higher post-intervention (post = 91.9%, 95% CI = 87.8, 96.1, vs. pre = 52.4%, 95% CI = 41.9, 62.9; p <0.001). Clinical team members reported greater confidence that their decisions accurately represented each patient’s wishes post-intervention (mean = 6.5) compared to pre-intervention (mean = 3.3, 1 = low, 10 = high, p <0.001). Patients reported high satisfaction (mean = 26.4, SD = 3.2; 6 = low, 30 = high) and low decisional conflict (mean = 28.8, SD = 8.2; 20 = low, 80 = high) with decisions about end-of-life care, and high satisfaction with the decision-aid (mean = 52.7, SD = 5.7, 20 = low, 60 = high). Patient knowledge regarding ACP increased post-intervention (pre = 47.8% correct responses vs. post = 66.3%; p <0.001) without adversely affecting patient anxiety or self-determination. Conclusion: A computer based ACP decision-aid can significantly improve clinicians’ understanding of ALS patients’ wishes with regard to end-of-life medical care.

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