Quality of Life and Adaptation in People With Spinal Cord Injury: Response Shift Effects From 1 to 5 Years Postinjury.

OBJECTIVE: To investigate response shift effects in spinal cord injury (SCI) over 5 years postinjury.

DESIGN: Prospective cohort study observed at 1, 2, and 5 years post-SCI.

SETTING: Specialized SCI centers.

PARTICIPANTS: Sample included 1125, 760, and 219 participants at 1, 2, and 5 years post-SCI (N = 2104). The study sample was 79% men; 39% were motor/sensory complete (mean age, 44.6±18.3y).

INTERVENTIONS: Not applicable.

MAIN OUTCOME MEASURES: Patient-reported outcomes included the Medical Outcomes Study 36-Item Short-Form Health Survey version 2 and the Life Satisfaction-11 Questionnaire. Participant latent variable scores were adjusted for (1) potential attrition bias and (2) propensity scores reflecting risk of worse outcomes. The Oort structural equation modeling approach for detecting and accounting for response shift effects was used to test the hypothesis that people with SCI would undergo response shifts over follow-up.

RESULTS: The study data comprised the time after FIM scores, an objective measure of motor and cognitive function, had improved and stabilized. Three latent variables (Physical, Mental, and Symptoms) were modeled over time. The response shift model indicated uniform recalibration and reconceptualization response shift effects over time. When adjusted for these response shift effects, Physical showed small true change improvements at 2- and 5-year follow-up, despite FIM stability.

CONCLUSIONS: We detected recalibration and reconceptualization response shift effects in 1- to 5-year follow-up of people with SCI. Despite stable motor and cognitive function, people with SCI are adapting to their condition. This adaptation reflects a progressive disconnection between symptoms and physical or mental health, and a real improvement in the Physical latent variable.