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.