TY  - JOUR
PY  - 2013//
TI  - Rationale and design of the prospective German registry of outcome in patients with severe disorders of consciousness following acute brain injury (KOPF-R)
JO  - Archives of physical medicine and rehabilitation
A1  - Eva, Grill
A1  - Anke-Maria, Klein
A1  - Kaitlen, Howell
A1  - Marion, Arndt
A1  - Lydia, Bodrozic
A1  - Jürgen, Herzog
A1  - Ralf, Jox
A1  - Eberhardt, Koenig
A1  - Ulrich, Mansmann
A1  - Friedemann, Müller
A1  - Thomas, Müller
A1  - Dennis, Nowak
A1  - Matthias, Schaupp
A1  - Andreas, Straube
A1  - Andreas, Bender
SP  - 1870
EP  - 1876
VL  - 94
IS  - 10
N2  - OBJECTIVE: To describe rationale and design of a new patient registry (KOPF-R, Koma Outcome von Patienten der Frührehabilitation) which has the scope to examine determinants of long-term outcome and functioning of patients with severe disorders of consciousness (DOC) . DESIGN: Prospective multicenter neurological rehabilitation registry SETTING: Five specialized neurological rehabilitation facilities PARTICIPANTS: Patients with DOC in vegetative state (VS) or minimally conscious state (MCS) as defined by the coma recovery scale-revised (CRS-R) following brain injury INTERVENTIONS: n/a MAIN OUTCOME MEASURES: Coma Recovery Scale-Revised (CRS-R), Functional Independence Measure (FIM), emergence from MCS RESULTS: The registry was set up in five 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, electrophysiological measures (evoked potentials, electroencephalogram, EEG), neuron specific enolase (NSE), current medication, functioning, cognition, participation, quality of life, quantity and characteristics of rehabilitation therapy, caregiver burden, and attitudes towards end-of-life decisions. By end of January 2012, 42 patients (38% female) with a mean age of 57 years (standard deviation SD 16) were enrolled. Main diagnoses were traumatic brain injury (TBI, 24%), intracerebral or subarachnoid hemorrhage (IAH/SAH, 31%), and anoxic-ischemic encephalopathy (AIE, 45%). Mean CRS-R score at admission to rehabilitation was 5.9 (SD 3.3), mean FIM score at admission was 18 (SD 0.4). CONCLUSIONS: The KOPF-registry aspires to contribute prospective data on prognosis in severe DOC.<p />  <p>Language: en</p>
LA  - en
SN  - 0003-9993
UR  - http://dx.doi.org/10.1016/j.apmr.2012.10.040
ID  - ref1
ER  -