The Tetrafigap Survey on the long-term outcome of tetraplegic spinal cord injured individuals: Part I. Protocol and methodology.

The Tetrafigap Survey, a multicentre epidemiological survey on the outcome of tetraplegic spinal cord injured (TSCI) people from their first admission to a Rehabilitation Department or Centre is currently being undertaken in France. The general objective of this survey is to evaluate the situation of the TSCI people and their conditions of life in its medical, psychological and social aspects. This first article is aimed at presenting the protocol and the methodology of this survey. In a second part, yet to be submitted for publication, the preliminary results will be presented. It was first necessary to create a database of the population of TSCI people known to the centres and medical rehabilitation services, removing double entries. The criteria used for inclusion in the study were: a complete or incomplete traumatic cervical cord lesion, including post-surgical complications; age 16 or over at the time of the accident which must have occurred before December 31, 1992. The enquiry consisted of a self-administered questionnaire carried out with surviving tetraplegic people who had given their informed consent for their participation. The questionnaire consecutively covered the following topics: the situation at the time of the accident, the medical evolution between the accident and the end of stay in a rehabilitation unit, their evolution after discharge and the current situation (medical, social, professional and personal). During this first phase, 6082 TSCI people were identified by the collaborating centres. The 603 files of those who had died and 769 double entries were removed. Thus, 4710 questionnaires were sent out. The results of the participation show that 2251 people gave their consent and received questionnaires (340 additional deaths were acknowledged at this step). 163 refused, 869 were lost for follow-up, and 67 were excluded. There was no reply from 1020 people. We received 1830 questionnaires of which 1669 fulfilled all the necessary criteria for data exploitation. Home interviews with people who gave their consent will be carried out in a second phase as well as a study of deaths. A 5-year longitudinal follow-up is scheduled.