Pediatric spinal cord injury

Abstract

Sustaining a Spinal Cord Injury (SCI) alters every aspect of a person s life significantly and irreversibly. Since SCI of traumatic etiology predominately occurs in young adult males, most research has focused on this group. Other demographic groups, such as children and women, have received much less attention. A SCI striking a child or adolescent, i.e. pediatric SCI (pedSCI), presents unique challenges due to ongoing physical and psycho-social development. As long as knowledge about pedSCI remains incomplete, effective targeting of high risk groups and situations for purposes of prevention is impossible. Additionally, the organization of care and rehabilitation for pedSCI requires a solid understanding of the scope of the problem.

Aims: The overall aim of this thesis is to define the incidence, management and consequences of SCI during childhood and adolescence in Sweden (Study I, II) and Europe (Study III) and, furthermore, to explore psychosocial factors of importance for rehabilitation from the patient perspective in persons who have sustained SCI during early and mid adolescence (11-15 years) (Study IV).

In Study I, a method of identifying pedSCI using population registers is described. Population registers offer a practical initial source for identification of a study population, although the number of false positives exceeds 70%. Subsequently, further refinement and quality control is necessary in order to verify a true cohort. Such further verification proved to be both time-consuming and tedious.

In Study II, data from population registers, County Habilitation Centers and several informal sources were used to estimate the incidence of pedSCI in Sweden during the years 1985-1996 among children aged 0-15 years. Contacts with treating hospitals, reviews of medical records and/or personal interviews were used to verify primary data. In total, 92 cases were thus identified. The incidence was found to be 4.6 cases/million children/year. When excluding prehospital fatalities, the incidence was 2.4. The main cause of injury overall was traffic accidents. Among surviving adolescents, sports-related injuries were as common a cause as traffic accidents. The survivors were treated in 18 different hospitals. We conclude that pedSCI is rare in Sweden. This is likely to be a benefit of the systematic injury prevention programs that have been implemented in Sweden. On the other hand, care of these patients was found to be very fractionated and unsystematized.

In Study III, a short semi-structured questionnaire was sent to respondents working with SCI in 19 countries in Europe. PedSCI was reported rare throughout Europe. Only in Portugal and Sweden had the incidence of pedSCI previously been determined. The reported incidence estimates varied considerably, from about 0.9 cases/million children/year to about 23 cases/million children/year. The management differed depending on differences in the division of labor between pediatric and adult health care providers and on the local organization of health care.

In Study IV, twenty-four of the 28 persons who had sustained a SCI in early-to-mid-adolescence in Sweden during 1985-1996 participated in the study. Semi-structured interviews were made an average of 10 years post injury. Narratives were analyzed qualitatively according to content analysis. Parents and peers were found to have played an important role in helping the persons cope with their injury. Parents frequently acted as advocates in interactions with health care providers, as supporters and as containers of sorrow, frustration and anger. Peers acted as promoters of activity and identity development. Health care providers were fairly often perceived as not sufficiently facilitating the involvement of this network. Rehabilitation professionals might be encouraged to increase their knowledge of adolescence medicine in order to better meet the specific needs and demands of persons in this age group. It is further suggested that parents and peers be considered important partners in the joint rehabilitation effort.