Survey of the needs of patients with spinal cord injury: impact and priority for improvement in hand function in tetraplegics

Objective: To investigate the impact of upper extremity deficit in subjects with tetraplegia. Setting: The United Kingdom and The Netherlands. Study design: Survey among the members of the Dutch and UK Spinal Cord Injury (SCI) Associations. Main outcome parameter: Indication of expected improvement in quality of life (QOL) on a 5-point scale in relation to improvement in hand function and seven other SCI-related impairments. Results: In all, 565 subjects with tetraplegia returned the questionnaire ( overall response of 42%). Results in the Dutch and the UK group were comparable. A total of 77% of the tetraplegics expected an important or very important improvement in QOL if their hand function improved. This is comparable to their expectations with regard to improvement in bladder and bowel function. All other items were scored lower. Conclusion: This is the first study in which the impact of upper extremity impairment has been assessed in a large sample of tetraplegic subjects and compared to other SCI-related impairments that have a major impact on the life of subjects with SCI. The present study indicates a high impact as well as a high priority for improvement in hand function in tetraplegics.