Article

OBJECTIVE: To describe the rationale and design of a new patient registry (Koma
Outcome von Patienten der Fruhrehabilitation-Register [KOPF-R; Registry for Coma
Outcome in Patients Undergoing Acute Rehabilitation]) that has the scope to
examine determinants of long-term outcome and functioning of patients with severe
disorders of consciousness (DOC). DESIGN: Prospective multicenter neurologic
rehabilitation registry. SETTING: Five specialized neurologic rehabilitation
facilities. PARTICIPANTS: Patients (N=42) with DOC in vegetative state or
minimally conscious state (MCS) as defined by the Coma Recovery Scale-Revised
(CRS-R) after brain injury. Patients are being continuously enrolled. The data
presented here cover the enrollment period from August 2011 to January 2012.
INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: CRS-R, FIM, and emergence
from MCS. RESULTS: The registry was set up in 5 facilities across the state of
Bavaria/Germany with a special expertise in the rehabilitation of acquired brain
injury. Inclusion of patients started in August 2011. Measures include
sociodemographic and clinical characteristics, course of acute therapy,
electrophysiologic measures (evoked potentials, electroencephalogram),
neuron-specific enolase, current medication, functioning, cognition,
participation, quality of life, quantity and characteristics of rehabilitation
therapy, caregiver burden, and attitudes toward end-of-life decisions. Main
diagnoses were traumatic brain injury (24%), intracerebral or subarachnoid
hemorrhage (31%), and anoxic-ischemic encephalopathy (45%). Mean CRS-R score +/-
SD at admission to rehabilitation was 5.9 +/- 3.3, and mean FIM score +/- SD at
admission was 18 +/- 0.4. CONCLUSIONS: The KOPF-R aspires to contribute
prospective data on prognosis in severe DOC.
CI - Copyright (c) 2013 American Congress of Rehabilitation Medicine. Published by
Elsevier Inc. All rights reserved.

Langue : ANGLAIS