Use of healthcare, patient satisfaction and burden of care in Guillain-Barre syndrome

Objective: The aim of this study was to investigate, in an unselected sample of patients with Guillain-Barre syndrome in Sweden, the utilization of healthcare resources, satisfaction with these resources, informal help and the burden of care on family caregivers during the first 2 years after onset. Subjects: Forty-four patients were enrolled from 8 hospitals, and 42 of them were followed for 2 years. Methods: Data on the utilization of hospital inpatient and outpatient care, primary care and community-based services were collected via computerized registry information, medical records and a specific protocol. Patient satisfaction and the burden on family caregivers were studied using questionnaires. Results: Forty-one patients required inpatient hospitalization for a mean of 82 days. Patients with persistent dependency during activities of daily living had significantly longer hospital stays and more days of outpatient rehabilitation. The majority of patients were satisfied with their care, but dissatisfaction was found regarding information and finances. At 2 years after onset, 26% of patients still depended on informal help. The spouses expressed increased concern and responsibility for household and family. Conclusion: Patients with persistent disability due to Guillain-Barre syndrome were found to have long-term need for services from the healthcare system and informal help.