Later health-related quality of life in adults who have sustained spinal cord injury in childhood

Abstract

The outcome in terms of health-related quality of life (HRQL) in pediatric spinal cord injury (SCI) was studied in 36 adults who had sustained an SCI in childhood. The patients were interviewed and clinically examined. HRQL was assessed with the 15D, a generic fifteen-dimensional self-administered HRQL instrument. The 15 multiple-level dimensions are moving, seeing, hearing, breathing, sleeping, eating, communicating, urinary continence, working, social participation, mental functioning, pain, depression, distress and perceived health. The respondents choose, for each dimension, the level that best describe their health status. In the 15D valuation system the respondents first assign a relative importance weight to each dimension and then a relative value to the levels on each dimension. To derive the 15D HRQL score on a 0-1 scale the level values and importance weights are multiplied and combined with the levels chosen. The average HRQL score of this SCI group was significantly lower than that measured in the population sample. The average importance weights assigned by the SCI group differed significantly (P < 0.05) from those assigned by the general population on several dimensions. The weights assigned by the SCI group were higher for the dimensions of mental functioning, communicating, social participation and seeing and lower for moving, working, sleeping and eating. These differences in valuing the dimensions of HRQL can influence behaviour and should therefore be taken into consideration in rehabilitation.