Utilisation of patient perspective to validate clinical measures of outcome following spinal cord injury

Purpose. The purpose of this article is to utilise the perspective of persons with a spinal cord injury (SCI), gained from focus groups, to validate recommended clinical measures of outcome. Method. Clinical measures of outcome as recommended by Wood-Dauphinee and the SCI Consensus Group were categorised using the World Health Organisation's International Classification of Functioning, Disability and Health (ICF). These were then cross-referenced to the problems of functioning identified by patients in 10 focus groups held in New Zealand as part of the International ICF Core Set project. The focus groups were performed separately for people in the post-acute situation and in the chronic situation to address different experiences since SCI. Results. In the post-acute group, the recommended measures of functioning, the Functional Independence Measure (FIM), Hospital Anxiety and Depression Scale and Visual Analogue Scale for pain correlated well against the focus groups identification of problems of functioning. In the chronic group, the short-form Craig Handicap Assessment and Reporting Technique (sf-CHART), the SF-12 and the Life Satisfaction Questionnaire (LSQ) largely captured the problems of functioning identified. There were some categories that were common to both patient groups and were not changed by time since SCI. In addition, there were some problems of functioning identified by the patient groups that were not covered by the suggested measures. Conclusions. Utilisation of a battery of outcome measures based on a theoretical framework can quantify problems of functioning in the SCI population. Although the measures suggested by SCI Consensus Group largely capture the problems of functioning, other outcome measures have been shown to be more responsive to the changes in the SCI population and also incorporate more of the identified problems of functioning.