Abstract Details

Title Acute and Chronic Life-altering Consequences of Guillain-Barré Syndrome: A Qualitative Study Identifies Significant Unmet Need for Timely Diagnosis and Appropriate Treatment

Topic Neuro Trauma and Critical Care

Presentation(s) P3 - Poster Session 3 (5:00 PM-6:00 PM)

Poster/Presentation
Number 19-005

Objective Understand the Guillain-Barré syndrome (GBS) patient journey, experiences and long-term burden, to identify required management improvements.

Background GBS is a rare, life-threatening, rapid-onset, neuromuscular emergency with life-altering residual symptoms. GBS remains poorly understood and represents a substantial burden for patients, families, and the healthcare system.

Design/Methods US-based patients with GBS and care partners underwent online interviews. Symptom presentation, diagnosis, hospitalization, in-patient rehabilitation, discharge and long-term impact were discussed.

Results In January 2025, 27 patients with GBS (aged 21–70+ years at diagnosis) and 6 care were interviewed partners (14 male/19 female). Most (n=20) had private medical insurance. Initial GBS symptoms were highly variable yet potentially debilitating. Patients experienced significant diagnostic delays: 42% of patients were diagnosed ≤2 weeks of symptom presentation and 66% were misdiagnosed. Patients expressed feelings of fear, confusion and anxiety at diagnosis and highlighted a need for increased GBS awareness among healthcare professionals. Upon diagnosis, 67% were admitted to intensive care for ≥2 weeks and 25% required ventilation, many for multiple weeks; most were treated with intravenous immunoglobulins (88%). Patients reported fragmented and disjointed care, and uncertainty around treatment efficacy, with feelings of anxiety, fear, and disappointment if symptoms did not improve; many felt excluded from decision-making. Overall, 81% of patients underwent in-patient rehabilitation (33% for ≥7 weeks). Patients reported long-term physical, functional and emotional impacts. Many retired or could no longer do their jobs. Upon discharge, 66% required mobility aids, and 16% long-term care. Many had continued pain, functional and intimacy issues. Average hospital bills were $220,000–$285,000, with some patients and care partners facing financial hardship. Patients reported social loss and isolation.

Conclusions GBS is a potentially life-altering illness needing patient-centered solutions. Accurate, rapid diagnosis, better coordinated care, more efficacious treatments and long-term support systems are required to improve the lives of patients diagnosed with GBS and their care partners.

Authors/Disclosures
Behnam Sarafpour (Annexon Biosciences) PRESENTER	Dr. Sarafpour has received personal compensation for serving as an employee of Annexon Biosciences. Dr. Sarafpour has or had stock in Annexon Biosciences.
Bismay Mishra	Mr. Mishra has received personal compensation for serving as an employee of Annexon Biosciences.
Chelsey Fix-King	Ms. Fix-King has nothing to disclose.
Mark Solomon	Mr. Solomon has nothing to disclose.
Mark Rushek	Mr. Rushek has nothing to disclose.
Jeffrey A. Allen, MD (University of Minnesota)	Dr. Allen has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Argenx. Dr. Allen has received personal compensation in the range of $500-$4,999 for serving as a Consultant for csl behring. Dr. Allen has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Takeda. Dr. Allen has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Grifols. Dr. Allen has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Alnylam. Dr. Allen has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Sanofi. Dr. Allen has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Astra Zeneca. Dr. Allen has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Johnson and Johnson. Dr. Allen has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Alexion. Dr. Allen has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Annexon. Dr. Allen has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Immunovant. Dr. Allen has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Amgen. Dr. Allen has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Dianthus. Dr. Allen has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for CSL Behring. Dr. Allen has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Annexon. Dr. Allen has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Takeda. Dr. Allen has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Argenx. Dr. Allen has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Dianthus. Dr. Allen has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for CSL behring. Dr. Allen has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Takeda. Dr. Allen has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Alnylam. Dr. Allen has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Alexion. Dr. Allen has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Johnson and Johnson.

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