The Italian National Registry of severe acquired brain injury: epidemiological, clinical and functional data of 1469 patients

Abstract

Background: The lack of knowledge about epidemiological and clinical data of patients with Acquired Brain Injury (ABI) admitted to Rehabilitation facilities in Italy led to the creation, in June 2008, of a data collection on-line registry.

Aim: To collect epidemiological and clinical data and to evaluate functional outcome of patients with severe traumatic and non-traumatic ABI admitted to Rehabilitation facilities in Italy between June 2008 and December 2011 and to compare data of patients with ABI of different aetiologies.

Design: Observational retrospective study.

Setting: The study involved 29 Italian Rehabilitation facilities.

Population: The study enrolled 1469 patients with severe traumatic (TBI) and non-traumatic ABI (NTBI).

Methods: Data collected included demographic (number of patients with TBI and NTBI, gender, age) and clinical characteristics (provenience, number of days elapsed between onset and rehabilitation admission, rehabilitation length of stay, discharge destination, death and vegetative state diagnosis, presence of percutaneous endoscopic gastrostomy, tracheostomy, pressure sores and paraosteoarthropathies). Functional outcome was evaluated using the Disability Rating Scale.

Results: Of the whole population studied, 44.31% and 55.69% patients had suffered a TBI and a NTBI, respectively. In the NTBI group 40.09% had a cerebrovascular injury, 12.04% an anoxic brain damage, 3.6% had a brain injury of other causes. The mean age was 43.67 and 56.68 for subjects with TBI and NTBI, respectively. Patients with TBI showed a lower onset-admission interval (OAI), compared with NTBI group; no difference in rehabilitation length of stay (LOS) was recorded between groups. Patients with TBI presented a lower DRS score at admission and discharge and returned home more frequently than NTBI group.

Conclusions: The creation of a National registry allows the collection of data about patients with ABI in order to study the clinical course, the functional outcome and to establish a basis for comparison with other data sources. Clinical Rehabilitation Impact. Data collection could be useful in the evaluation and planning of rehabilitation pathways, and to assess the allocation of healthcare and rehabilitative resources.