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.