Centers for patients with prolonged disorder of consciousness: a preliminary international map.

Abstract

Introduction: Prolonged disorders of consciousness (pDoC) patients require specialized care to support recovery and manage complications, but information regarding the location and scope of dedicated centers is lacking. We conducted an international survey among specialists in this field to identify centers serving this population and developed a publicly available online resource for care providers, families, stakeholders, and neuroscientists involved in the care and management of people with pDoC.

Methods: A 17-question survey was distributed online between May 2022 and May 2024 to IBIA (International Brain Injury Association) members and sent to other professional societies involved in pDoC care. Responses were then grouped and analyzed based on geographic regions (Europe/UK, USA, and others).

Results: We collected data from 153 centers across 35 countries. Most centers indicated they accepted patients of all etiologies and ages, with regional differences in length of stay, access pathways, and discharge criteria. Nearly all centers were reported to provide caregiver training and counseling. A link to the map with centers contact information had been published on the IBIA website (https://www.internationalbrain.org/membership/ibia-special-interest-groups/disorders-of-consciousness-special-interest-group/disorders-of-consciousness-programs-project).

Discussion and conclusions: Our survey allowed the creation of the first preliminary international map of centers specialized in pDoC available online to families and providers. Future efforts are needed to identify other relevant centers of care, increase geographical representation, and foster collaboration to improve care accessibility and outcomes for patients with pDoC.