Utilization of patient navigation services in care delivery for patients with glioblastoma across medical center sizes: A cross-sectional survey of caregivers
Academic Article
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.
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.
