EOLP-08. Translating Insights from Amyotrophic Lateral Sclerosis to High-Grade Primary Brain Tumor: Promoting the Practice of Early, Effective Advance Care Planning

Abstract BACKGROUND Both amyotrophic lateral sclerosis (ALS) and high-grade primary brain tumors (HGPBT) are progressive, incurable neurological diseases with profound impacts on patients’ cognition, communication, and function. Timely advance care planning (ACP) is essential for supporting patient autonomy and preparing families for complex decision-making. While ACP is well integrated into the care trajectory for ALS, it remains inconsistently implemented in HGPBT populations. OBJECTIVE To synthesize the literature on ACP in ALS and HGPBT and identify translatable strategies from the ALS model to enhance ACP delivery in patients with HGPBT METHODS We conducted a narrative synthesis of literature on ACP in both the ALS and HGPBT populations using CINAHL and Ovid databases. To accomplish this, we completed two individual searches using the medical subject headings (MeSH) thesaurus to identify keywords for HGPBT, ALS, and ACP. We did not confine the searches to any specific time period. We placed a special focus on the timing, content, and provision of services surrounding ACP in both populations. RESULTS The ALS literature reflects a more proactive approach to ACP. Structured discussions, particularly in ALS centers, about mechanical ventilation, nutrition, and end-of-life preferences are normalized and revisited over time. In contrast, ACP in HGPBT often occurs late in the disease course, hindered by sudden cognitive decline, prognostic uncertainty or denial, and clinician discomfort with initiating discussions. CONCLUSION In this narrative synthesis we observed key elements from the ALS approach to ACP, including early initiation, interdisciplinary collaboration, and longitudinal engagement. These approaches in ALS could help to inform ACP models in caring for patients with HGPBT. Our findings in this review highlight important strategies in which neuro-oncology clinicians and team members might initiate early ACP discussions while honoring individual patient needs.

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Publication Details

Journal
Neuro-Oncology
Published
2025-11-01
DOI
https://doi.org/10.1093/neuonc/noaf201.0732
Primary Topic
Amyotrophic Lateral Sclerosis Research
Type
article
Field-Weighted Citation Impact
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article

EOLP-08. Translating Insights from Amyotrophic Lateral Sclerosis to High-Grade Primary Brain Tumor: Promoting the Practice of Early, Effective Advance Care Planning

Ryan David Nipp, Laurie A. Minns, Amanda Kate McDaniel, A. G. Watkins
Neuro-Oncology
Amyotrophic Lateral Sclerosis Research
article

EOLP-08. Translating Insights from Amyotrophic Lateral Sclerosis to High-Grade Primary Brain Tumor: Promoting the Practice of Early, Effective Advance Care Planning

Ryan David Nipp, Laurie A. Minns, Amanda Kate McDaniel, A. G. Watkins
article en

Abstract

Abstract BACKGROUND Both amyotrophic lateral sclerosis (ALS) and high-grade primary brain tumors (HGPBT) are progressive, incurable neurological diseases with profound impacts on patients’ cognition, communication, and function. Timely advance care planning (ACP) is essential for supporting patient autonomy and preparing families for complex decision-making. While ACP is well integrated into the care trajectory for ALS, it remains inconsistently implemented in HGPBT populations. OBJECTIVE To synthesize the literature on ACP in ALS and HGPBT and identify translatable strategies from the ALS model to enhance ACP delivery in patients with HGPBT METHODS We conducted a narrative synthesis of literature on ACP in both the ALS and HGPBT populations using CINAHL and Ovid databases. To accomplish this, we completed two individual searches using the medical subject headings (MeSH) thesaurus to identify keywords for HGPBT, ALS, and ACP. We did not confine the searches to any specific time period. We placed a special focus on the timing, content, and provision of services surrounding ACP in both populations. RESULTS The ALS literature reflects a more proactive approach to ACP. Structured discussions, particularly in ALS centers, about mechanical ventilation, nutrition, and end-of-life preferences are normalized and revisited over time. In contrast, ACP in HGPBT often occurs late in the disease course, hindered by sudden cognitive decline, prognostic uncertainty or denial, and clinician discomfort with initiating discussions. CONCLUSION In this narrative synthesis we observed key elements from the ALS approach to ACP, including early initiation, interdisciplinary collaboration, and longitudinal engagement. These approaches in ALS could help to inform ACP models in caring for patients with HGPBT. Our findings in this review highlight important strategies in which neuro-oncology clinicians and team members might initiate early ACP discussions while honoring individual patient needs.

Neuro-OncologyVol. 27(Supplement_5)
Wilmington College (US), Oklahoma City University (US), University of Oklahoma Health Sciences Center (US), University of Oklahoma (US)
Openalex Percentile: Top 53%
Amyotrophic Lateral Sclerosis Research
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