Investigating changes in quality of life and function along the lifespan for people with spinal cord injury.

OBJECTIVE: To track changes in quality of life and function for people with spinal cord injury (SCI) along the lifespan. DESIGN: A wave panel design in which data were collected annually over 5 years across 6 strata that represented different periods since injury. SETTING: Telephone interviews with participants in their home environment. PARTICIPANTS: People (n=270) who had sustained a traumatic SCI in Queensland, Australia, over the previous 60 years. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Quality of life was measured using the World Health Organization Quality of Life-8. Human functioning was measured in 3 components. Body structure/function was measured using the Secondary Conditions Surveillance Instrument. Activity was measured using the motor subscale of the FIM (mFIM) and the Clinical Outcomes Variables Scale. Participation was measured using the Community Integration Measure (CIM) and the Impact on Participation and Autonomy questionnaire. RESULTS: Quality of life remained relatively constant across the lifespan. For body structure/function, there was a significant increase in secondary conditions with time since injury. There was a significant decrease in activity as measured by the mFIM for higher functioning individuals. Participation, as measured by the CIM, showed a significant increase with time since injury, but not when adjusted for the American Spinal Injury Association Impairment Scale, income level, and living situation. CONCLUSIONS: The findings of this study highlight that people with SCI are able to maintain quality of life and participation along the lifespan; however, increases in secondary conditions and a decline in function over time are likely. Rehabilitation services could work more effectively at addressing secondary prevention through enhanced monitoring over time, while broader societal responses are likely to hold the key to optimizing human functioning.

Reliability of the clinical outcome variables scale when administered via telephone to assess mobility in people with spinal cord injury.

OBJECTIVE: To examine the equivalence reliability and test-retest reliability of the Clinical Outcome Variables Scale (COVS) when administered via telephone (TCOVS) to people with spinal cord injury (SCI). DESIGN: Equivalence (telephone administration vs in-person) and test-retest reliability study. SETTING: Assessments conducted in participants' home environment. PARTICIPANTS: Equivalence reliability was examined in a convenience sample of 37 people with a diagnosis of traumatic SCI who had been discharged from the Queensland Spinal Injuries Unit to the community. In a separate group of participants, test-retest reliability of COVS when administered via telephone was examined in 43 people with SCI who were randomly selected from the Queensland Spinal Cord Injuries Service records. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Reliability was assessed at the subscale and composite score level using intraclass correlation coefficients (ICC(2,1)) and Bland-Altman limits of agreement. RESULTS: Reliability was good for TCOVS and COVS for the composite score (ICC=.98), mobility subscale (ICC=.97), and ambulation subscale (ICC=.99). Reliability was also good for TCOVS test and retest assessments for the composite score (ICC=1), mobility subscale (ICC=1), and ambulation subscale (ICC=1). For all comparisons, most data points were within the 95% limits of agreement and the width of limits of agreement were considered to be clinically acceptable. CONCLUSIONS: The study findings confirm the equivalence and test-retest reliability of the TCOVS in an SCI population when administered by trained raters.

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.