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Study Design: Longitudinal study with mortality follow-up., Objective: Identify predictive factors for long-term mortality following tetraplegic spinal cord injury (TSCI)., Setting: The Tetrafigap survey is a multi-centre epidemiological survey on the long-term outcome of persons with TSCI, initiated in France in 1995 with the participation of 35 rehabilitation centres., Methods: The mortality follow-up involves 1241 persons with TSCI who were admitted to one of the study rehabilitation units at the initial phase and who completed the initial self-administered questionnaire. There were 226 observed deaths (18.2%) during an 11-year period. Logistic regression methods, with estimates of odds ratios (ORs), incorporating clinical, functional and social participation data were used to determine the factors related to mortality. This was followed by multivariate analysis to determine the best predictive factors for long-term mortality., Results: Risk of death increases significantly with age but not with the time elapsed since the accident. The risk of death is higher in men. Interestingly, clinical variables are not the best predictors of long-term mortality. Instead, the significant effect of poor social participation (being single, infrequent contact with friends) and functional limitations (full assistance required with dressing or eating) persists after adjustment for other variables., Conclusion: Once the medical situation becomes more stable, factors related to the long-term mortality of persons with TSCI are not exactly identical to those observed in the short acute-phase and during the first year after the accident. Social participation has a significant effect on mortality.

Objectives: After presenting in part I the protocol and the methodology of the Tetrafigap Survey, this article is aimed at investigating demographic characteristics, initial cause of trauma and spinal injury in the French tetraplegic spinal cord injured (TSCI) population., Study Design: The Tetrafigap Survey is a multicentre epidemiological survey on the outcome of TSCI people following their first admission to a rehabilitation department or centre., Setting: The survey was conducted with the participation of 35 French-speaking collaborating centres., Method: A self-administered questionnaire was carried out among consenting TSCI patients followed by the centres. 1,668 questionnaires fulfilled all the required criteria for data analysis., Results: The socio-demographic variables (gender, current age and age at the time of accident, duration of disability), circumstances of accident as well as initial spinal cord lesions are reviewed in the body of the text., Conclusion: The results from this survey form the first detailed description of the French TSCI population. Whereas demographic data show many similarities with those of previous studies in other countries, some specific differences are highlighted, in particular relating to the type of accident.

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.