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 out come 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 eval uate the situation of the TSCI people and their conditions of life in its medical, psychological and social aspects. This first article is a imed at presenting the protocol and the methodology of this survey. In a second part, yet to be submitted for publication, the preliminary r esults will be presented. It was first necessary to create a database of the population of TSCI people known to the centres and medical reha bilitation services, removing double entries. The criteria used for in clusion 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 carr ied out with surviving tetraplegic people who had given their informed consent for their participation, The questionnaire consecutively cove red the following topics: the situation at the time of the accident, t he medical evolution between the accident and the end of stay in a reh abilitation unit, their evolution after discharge and the current situ ation (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 remove d. Thus, 4710 questionnaires were sent out. The results of the partici pation show that 2251 people gave their consent and received questionn aires (340 additional deaths were acknowledged at this step), 163 refu sed, 869 were lost for follow-up, and 67 were excluded. There was no r eply from 1020 people. We received 1830 questionnaires of which 1669 f ulfilled all the necessary criteria for data exploitation. Home interv iews with people who gave their consent will be carried out in a secon d phase as well as a study of deaths, A 5-year longitudinal follow-up is scheduled.