Awareness of impairments four years post traumatic brain injury: Discrepancies between patients’ and proxys’ reporting of symptoms

Abstract

To assess disagreements in complaints between patients and their caregivers, 4 years after a severe traumatic brain injury (TBI), and to identify factors related to this disparity of complaints. Paris-TBI is a multi-centre prospective cohort study of patients aged 15 years or older with a severe TBI in the Parisian area, France. The four-year evaluation included a complaints questionnaire completed by both the patient and his caregiver and neuropsychological assessment. 25 closed questions compose this scale, corresponding to the most comment complaints after a severe TBI. Issues are related to lack of control, slowness, somatic concerns, mood, social interactions, communication and attention disorders. Among 245 survivors, 91 patient/caregiver pairs were included (mean age 32 years, 80% men). To measure the disagreement in complaints, the number of items where the caregiver described an anomaly while the patient did not was determined, which corresponded to the caregivers’ “overcomplaint”. There was 74.6% of agreement in all items between patient and their caregivers and 14.6% of disagreement in the direction of caregivers’ overcomplaint. There were few disagreements regarding somatic complaints. The caregivers’ overcomplaint was preferentially expressed in the items relating to aggressiveness, irritability, disinhibition and attention disorders. The disagreements in complaints were highly linked to self-appraisal difficulties ( P = 0.00542) assessed by item 5 of the NRS-R (Neurobehavioural rating scale revisited). Caregivers’ overcomplaint to the patient was neither related to the TBI gravity, neither to the Barthel Index, neither to the DEX (dysexecutive the questionnaire), neither to overall NRS-R, and nor to GOS (Glasgow outcome scale). Overcomplaint’ caregivers at four years of a severe TBI is linked to self-appraisal difficulties. No link was found between lack of consciousness disorders and TBI gravity, or severity of the disability or even the cognitive impairments.