Evolution over 20 years of factors influencing the autonomy and quality of life of people with severe head injuries in the Lille area

Introduction/Background In 1998, a research on severe traumatic brain injury (STBI) patients 3 years after onset highlighted many difficulties regarding autonomy and quality of live (QOL). Lack of follow-up and specialized infrastructures was clear. Since then, the follow-up has been organized around the Brain injuries 59/62 regional network. We aimed at comparing the evolution of autonomy and QOL and their influencing factors (IF) between the two periods. Material and method All STBI people in the same area were evaluated 3 years after onset using the European Brain Injury Society document. Autonomy and QOL IF were analysed and compared between the two periods (end of the 1990s and 2010s). Results On the 23 and 24 evaluated patients respectively in 1998 and 2016, the overall autonomy (especially in elaborated activities) and scores of QOL tended to be higher in 2016. According to the family, the average QOF has significantly improved ( P  = 0.023). Changes in the role in the family ( P  = 0.007) and the need for respite ( P −3 ) were minor. After discharge, the multidisciplinary follow-up was more frequent. Factors impacting negatively on the overall autonomy, respectively in 1998 and 2016, were: coma duration ( P  = 0.01/0.04), length of stay in acute care ( P  = 0.01/0.002), severity of physical deficiencies ( P  = 0.00/0.04) and several cognitive disorders. In 1998 as well as in 2016, the most dependent TBI people were having significantly more physiotherapy ( P  = 0.06/0.006) and speech therapy cares ( P  = 0.04/0.01). In 2016, patients were significantly more followed by the multidisciplinary team of the network ( P  = 0.029) and the socio-medical teams ( P  = 0.003). Concerning QOL, only cognitive and psycho-behavorial impairments were found in 1998 as well as in 2016. In 2016, we also found that severity of physical impairments negatively influenced the QOL ( P  = 0.029). Conclusion Better support for physical, cognitive and behavioral difficulties could lead to improved autonomy and QOL in TBI patients.