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

Abstract

The Tetra®gap Survey, a multicentre epidemiological survey on the outcome of tetraplegic spinal cord injured (TSCI) people from their ®rst 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 ®rst 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 ®rst 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 ®rst phase, 6082 TSCI people were identi®ed by the collaborating centres. The 603 ®les 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 ful®lled 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.

The Tetrafigap Survey on the long-term outcome of tetraplegic spinal cord injured persons: Part III. Medical complications and associated factors

“…It is a multi-centre epidemiological survey; its protocol and methodology are described in detail in part I. 21 The survey included persons with complete or incomplete TSCI, aged 16 years or over at the time of injury, 18 years or over at the time of the survey, and with a minimum 2-year delay. Their injury had resulted in an admission to one of the rehabilitation units which had agreed to take part in the project (35 departments or centres).…”

Rehabilitation of spinal cord injury in France: a nationwide multicentre study of incidence and regional disparities

“…2,3 This survey involved an unprecedented mobilization of the main French rehabilitation units providing care for tetraplegic SCI persons. Nevertheless, it appeared important to undertake an additional survey on the French incidence of SCI, to update previous estimates on the one hand, and, on the other, to obtain valid figures for the country as a whole.…”

Predictive factors of long-term mortality of persons with tetraplegic spinal cord injury: an 11-year French prospective study

“…Each of the centres listed individually, contacted all persons with tetraplegia who had come under their care, asking for their written consent to participate in the survey. [12][13][14] A total of 1830 questionnaires were returned (that is, a response rate of 77%), of which 1668 questionnaires fulfilled all the necessary criteria for data analysis. At the end of the questionnaire, participants were asked if they would agree to participate in a further enquiry and their contact details were requested.…”

“…The protocol and methodology are described in detail in a previous paper. 12 The following inclusion criteria were retained for the initial phase of the Tetrafigap Survey: tetraplegia from traumatic spinal cord lesion, complete or incomplete, including post-surgical, with or without associated brain trauma; aged 16 or over at the time of the accident that must have occurred more than 2 years ago (all subjects were adults at the time of the survey); and admitted to one of the rehabilitation units taking part in the project.…”

“…These concern clinical factors (such as level of the lesion, completeness of the lesion, respiratory assistance and so on), functional factors (physical independence and mobility) or environmental factors (marital situation, professional activity and social integration). In light of these results, as well as data from the Tetrafigap survey, 12 this study has a threefold objective. First, to identify any specific predictive factors for mortality when the study population is composed only of persons with tetraplegia.…”