Children and young adults in a vegetative or minimally conscious state after brain injury. Diagnosis, rehabilitation and outcome.

Severe brain injury can result in long lasting loss of consciousness. After recovering from a comatose state, some patients move over into a vegetative state that remains for weeks, months or even years. The presence of patients in a prolonged unconscious state is demanding for families, as well as for all professionals who are involved in the treatment and care of these patients. In 1987, this was encountered by the therapists in a small (paediatric) rehabilitation centre. This resulted in the development of a treatment programme, the Early Intensive Neurorehabilitation programme (EINP). Eventually, the need for a systematically evaluation of EINP resulted in a comprehensive research programme. The question is whether recovery processes emerge in patients in a long lasting vegetative state or in minimally conscious state. And if so, questions arise whether treatments have positive effects and what the long-term functional outcome of these patients will be. In this thesis, three topics have been elaborated. Firstly, the focus was on the concept of the different levels of consciousness, including the development of an observation scale: the Post-Acute Level of Consciousness scale (PALOC-s). This scale appeared to be highly reliable and valid and provides clinicians and researchers the possibility to distinguish between different levels of unconsciousness, what can contribute positively to the diagnosis, the prognosis and the treatment of these patients Secondly, the development of the level of consciousness of the children and young adults who participated in EINP was studied. The results indicate a positive effect of EINP on the recovery to consciousness. These results are sufficient to recommend the application of EINP for all patients in VS or MCS, as soon as possible after emerging from the comatose state Thirdly, the long-term outcome, social participation and quality of life of the patients, and the involvement and used coping strategies of family members were studied. The experienced quality of life by the patients appeared to be quite high, despite the fact that most of them encountered long-term consequences. Furthermore, the conclusion could be drawn that it is important to avoid a passive coping style in relatives to avoid anegative impact on the experienced long-term quality of life of the patients. This research project was originated during the development of EINP in 1987. From the start, it was recognized that evaluation of the recovery processes was important. Nevertheless, it appeared to be very difficult to develop a valid and reliable research design within the clinical context of the small (paediatric) rehabilitation centre. Now, 20 years later, it can be concluded that all the efforts of so many at last are successful. Based on this research project, recently EINP has been recognized as a valid rehabilitation technique for patients in VS and MCS. Twenty years ago, nobody could have thought that this would be the result of the development of one single treatment programme for one single five-year old girl