Health-related quality of life in traumatic brain injury: is a proxy report necessary?

Despite its importance to care, clinicians and researchers often discount patient-reported outcomes in favor of proxy reports, in persons with traumatic brain injury (TBI). The rationale relates to concerns about lack of awareness of patients regarding their functioning. However, although lack of awareness occurs in some patients with severe TBI, or in TBI involving certain lesion locations, or very soon after injury, this conclusion has been overgeneralized. The objective of this study is to determine the validity of patient-reported health-related quality of life by evaluating its relationship to injury severity and more objective indices of outcome, in a representative series of adults with TBI. A consecutive sample of 374 persons with TBI at least 14 years old, and having a post-resuscitation Glasgow Coma Scale score ≤12, an acute seizure, or a CT scan showing TBI- related findings. Seventy-six percent (374/491) of the eligible survivors were assessed at 6 months post-injury on the Life Satisfaction Survey. The greatest decrease in satisfaction was in the ability to think and remember, work, receive adequate income, and participate in leisure and recreational activities. Dissatisfaction significantly related to the functional limitation in that area as judged by the patients themselves (p<0.001) or by someone who knew them well (p≤0.001). The most severely injured group reported the most dissatisfaction for 13 out of 17 areas assessed. Patients with TBI, in general, do not need a proxy to report on their behalf regarding their functional limitations or health-related quality of life.