@article{ref1,
title="Who determines the quality of life of survivors of severe traumatic brain injury?",
journal="Neurocritical care",
year="2023",
author="Carhuapoma, Lourdes R. and Avadhani, Radhika and Hanley, Daniel F.",
volume="ePub",
number="ePub",
pages="ePub-ePub",
abstract="Using trial data from the Continuous Hyperosmolar Therapy in Traumatic Brain-Injured Patients (COBI) trial, Sébille and colleagues [1] examined the comparability of patients' and proxies' reports of physical and emotional function of survivors with severe traumatic brain injury (TBI). The authors reported that patients with moderate-to-severe TBI and their proxies, family members, and health care professionals differ in their perceptions of the survivors' long-term health state. Proxies had a more pessimistic view than patients in the case of major limitations and more optimistic responses than patients in the case of minor limitations related to physical and emotional health. Sébille and colleagues [1] have demonstrated that proxy responses to health-related quality of life measures for patients with acute neurologic injury have higher patient-proxy agreement for observable attributes relating to physical health and lower patient-proxy agreement for less easily observable attributes relating to psychosocial health [2,3,4,5,6,7].   Considering the evidence, it is critical to closely examine the impact of substituting proxy responses for patient reports, particularly in intervention-based clinical trials, because data from proxy respondents may negatively skew the utility of investigative treatments for patients with acute brain injury based on pessimistic report of health-related quality of life. Consequently, we urge caution in the combination of proxy responses and patient responses or in the isolated use of proxy reports to precisely characterize patient status until the sources of biases are fully understood.   Some patients, including those with high disease severity, may not be able to respond for themselves, making their health-related quality of life state inaccessible. Who determines the quality of life for these survivors? Although proxies have been deemed the voice of this vulnerable patient population, it is important to consider the impact of this substituted voice. Proxy (i.e., caregiver, family member) responses may be influenced by their own misunderstandings, biases, and limited knowledge of the patient's experiences, leading to inaccuracies in the patient's perspective of their quality of life...<p /> <p>Language: en</p>",
language="en",
issn="1541-6933",
doi="10.1007/s12028-023-01736-y",
url="http://dx.doi.org/10.1007/s12028-023-01736-y"
}