Long duration spinal cord injury: perceptions of functional change over time.

PURPOSE: To investigate perceptions of functional change over time held by individuals with long duration spinal cord injury (SCI) living in Queensland, Australia. METHOD: A retrospective telephone questionnaire was administered to 84 individuals who had sustained a SCI more than 20 years previously and were older than 15 at the time of injury. Motor subset scores of the Functional Independence Measure (FIM) and a single scale measuring mobility aids status (MAIDS), were collected for three points in time--post discharge from initial rehabilitation (D/C point); approximately 10 years post injury (Mid point) and currently (Current point). RESULTS: A significant number of participants perceived that their function had increased between the D/C and Mid points and had subsequently decreased between the Mid and Current points. Participants also reported an increasing dependence on mobility aids between the Mid point and the Current point. Those who reported functional decline between the Mid and Current points were significantly older than those who did not report functional decline but did not differ in duration of injury or age at onset. CONCLUSIONS: The results support the need for services that provide assessment and intervention for functional changes throughout the life span of people with SCI.

Perceived causes of change in function and quality of life for people with long duration spinal cord injury.

OBJECTIVE: To determine those factors perceived to change or threaten function and quality of life among individuals with long duration spinal cord injury. DESIGN: Retrospective self-report using telephone-administered questionnaire. SETTING: Queensland, Australia. SUBJECTS: Eighty-four community-resident persons with spinal cord injury. MAIN OUTCOME MEASURES: Functional Independence Measure, Delighted-Terrible Scale, Perceived Causes of Change Inventory. RESULTS: Pain and loss of strength were perceived to have caused change in function in 11.9% and 14.3% of participants respectively while these same factors were perceived to have caused change in quality of life in 19.0% and 17.9% of participants respectively. Even when measurable change had not occurred, pain and loss of strength were perceived threats to function in 45.2% and 44.0% of participants respectively, while these same factors were perceived threats to quality of life in 10.7% and 11.9% of individuals respectively. Emotional issues such as stress, depression, family functioning, financial status and employment were also perceived causes of change in quality of life. CONCLUSIONS: The ability of participants to identify the perceived causes of change in function and quality of life may have implications for preventative health care if these individuals are encouraged to seek assistance when these factors first become apparent.