Abstract 4139931: Multidisciplinary Care Coordination Between Cardiologists and Neurologists Improves Outcomes for Patients with Hereditary Transthyretin Amyloidosis with Polyneuropathy: Results of a Quality Improvement Initiative

Background: Patients with hereditary transthyretin amyloidosis (ATTRv) are often referred to amyloidosis centers for manifest cardiac symptoms and treated accordingly for transthyretin amyloid cardiomyopathy (ATTR-CM). However, emerging evidence suggests that many patients with variants traditionally associated with ATTR-CM also have polyneuropathic symptoms but often do not undergo comprehensive neurological evaluation and management that could prevent irreversible disease progression and improve quality of life. Research Question: What are the root causes of suboptimal multidisciplinary care that contribute to delayed diagnosis and comprehensive management of cardiomyopathy (CM) and polyneuropathy (PN) associated with ATTRv? Goals: The objective of this program was to improve multidisciplinary care from cardiology and neurology teams for patients with ATTRv. Methods: Cardiologists and neurologists from three amyloidosis centers engaged in two focus groups, completed surveys, and collected patient chart audits to evaluate their baseline ATTRv management processes and clinical workflows. During audit-feedback sessions, care teams analyzed their performance data and designed action plans to close gaps with the highest potential to improve patient outcomes. Results: Provider surveys (N=30) reported only 13% of institutions had referral protocols for neurologic workup of ATTRv, and 51% of providers were neutral or felt care coordination was ineffective. Similarly, data from patient charts (N=151) showed only 10% of patients completed PN screening to confirm diagnosis. During post-focus group participation, cardiologists exhibited heightened commitment to refer newly diagnosed patients to neurologists (39% to 76%) and to communicate with treating neurologists on disease status (44% to 76%). Although provider surveys showed 100% of patients are seen at least every 6 months, <5% received screening for emergent or progressive PN disease, whereas approximately 70% received CM screening. Identified gaps prompted practice changing initiatives including an improved intake process with PN screening and EMG referral, enhanced multidisciplinary collaboration to improve referral networks, and educational materials to heighten disease awareness. Conclusion: Practical strategies can be adopted by amyloidosis centers to ensure patients with ATTRv receive a comprehensive phenotypic workup and treatment through multidisciplinary collaboration between cardiologists and neurologists.

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Publication Details

Journal
Circulation
Published
2024-11-12
DOI
https://doi.org/10.1161/circ.150.suppl_1.4139931
Primary Topic
Amyloidosis: Diagnosis, Treatment, Outcomes
Type
article
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article

Abstract 4139931: Multidisciplinary Care Coordination Between Cardiologists and Neurologists Improves Outcomes for Patients with Hereditary Transthyretin Amyloidosis with Polyneuropathy: Results of a Quality Improvement Initiative

Michel G. Khouri, Jennifer G. Morgan, Cherilyn Heggen, Emily Zyborowicz et al.
Circulation
Amyloidosis: Diagnosis, Treatment, Outcomes
article

Abstract 4139931: Multidisciplinary Care Coordination Between Cardiologists and Neurologists Improves Outcomes for Patients with Hereditary Transthyretin Amyloidosis with Polyneuropathy: Results of a Quality Improvement Initiative

Michel G. Khouri, Jennifer G. Morgan, Cherilyn Heggen, Emily Zyborowicz, Jeffrey Carter
article en

Abstract

Background: Patients with hereditary transthyretin amyloidosis (ATTRv) are often referred to amyloidosis centers for manifest cardiac symptoms and treated accordingly for transthyretin amyloid cardiomyopathy (ATTR-CM). However, emerging evidence suggests that many patients with variants traditionally associated with ATTR-CM also have polyneuropathic symptoms but often do not undergo comprehensive neurological evaluation and management that could prevent irreversible disease progression and improve quality of life. Research Question: What are the root causes of suboptimal multidisciplinary care that contribute to delayed diagnosis and comprehensive management of cardiomyopathy (CM) and polyneuropathy (PN) associated with ATTRv? Goals: The objective of this program was to improve multidisciplinary care from cardiology and neurology teams for patients with ATTRv. Methods: Cardiologists and neurologists from three amyloidosis centers engaged in two focus groups, completed surveys, and collected patient chart audits to evaluate their baseline ATTRv management processes and clinical workflows. During audit-feedback sessions, care teams analyzed their performance data and designed action plans to close gaps with the highest potential to improve patient outcomes. Results: Provider surveys (N=30) reported only 13% of institutions had referral protocols for neurologic workup of ATTRv, and 51% of providers were neutral or felt care coordination was ineffective. Similarly, data from patient charts (N=151) showed only 10% of patients completed PN screening to confirm diagnosis. During post-focus group participation, cardiologists exhibited heightened commitment to refer newly diagnosed patients to neurologists (39% to 76%) and to communicate with treating neurologists on disease status (44% to 76%). Although provider surveys showed 100% of patients are seen at least every 6 months, <5% received screening for emergent or progressive PN disease, whereas approximately 70% received CM screening. Identified gaps prompted practice changing initiatives including an improved intake process with PN screening and EMG referral, enhanced multidisciplinary collaboration to improve referral networks, and educational materials to heighten disease awareness. Conclusion: Practical strategies can be adopted by amyloidosis centers to ensure patients with ATTRv receive a comprehensive phenotypic workup and treatment through multidisciplinary collaboration between cardiologists and neurologists.

CirculationVol. 150(Suppl_1)
University of North Carolina at Chapel Hill (US), Duke University (US)
Openalex Percentile: Top 82%
Amyloidosis: Diagnosis, Treatment, Outcomes
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