Patient-Proxy Agreement on the Health-Related Quality of Life One Year after Traumatic Brain Injury

• Published in: Archives of physical medicine and rehabilitation Vol. 98; no. 12; pp. 2540 - 2547
• Main Authors: Hwang, Hei-Fen, PhD, Chen, Chih-Yi, MS, Lin, Mau-Roung, PhD
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01.12.2017
• Subjects: Adult; Age Factors; Aged; Brain injuries, traumatic; Brain Injuries, Traumatic - psychology; Brain Injuries, Traumatic - rehabilitation; Caregivers; Cross-Sectional Studies; Educational Status; Environment; Female; Health Status; Humans; Interpersonal Relations; Longitudinal Studies; Male; Mental Health; Middle Aged; Patient preference; Patients - psychology; Physical Medicine and Rehabilitation; Proxy; Proxy - psychology; Psychometrics; Quality of Life; Rehabilitation; Reproducibility of Results; Taiwan; Trauma Severity Indices; TICS; brief version of the World Health Organization Quality of Life; HRQL; Telephone Interview of Cognitive Status; TTO; SD; ADLs; Glasgow Outcome Scale Extended; SG; caregiver; Glasgow Coma Scale; time tradeoff; TBI; GOSE; standard gamble; WHOQOL-BREF; QALYs; preference; traumatic brain injury; health-related quality of life; quality-adjusted life-years; proxy; activities of daily living; GCS; CES-D; Center for Epidemiologic Studies Depression Scale; standard deviation; Caregivers; Proxy; Brain injuries, traumatic; ICC; Rehabilitation; Patient preference; Quality of life
• ISSN: 0003-9993; 1532-821X
• DOI: 10.1016/j.apmr.2017.05.013

Abstract Objective To examine the level of agreement between patients and their proxies on a measure of health-related quality of life (HRQL) 1 year after traumatic brain injury (TBI). Design A cross-sectional study. Participants and Setting: Eighty-eighty patients with TBI identified from discharge records of four hospitals in Taiwan and 88 family members or friends who could answer questions regarding the patient’s health and HRQL 1 year after the injury. Main Outcome Measures A health profile of the brief Taiwanese version of the World Health Organization Quality of Life (WHOQOL-BREF) and two health utility measures of the time tradeoff (TTO) and standard gamble (SG). Results Compared to proxy responses, patients provided higher ratings of the WHOQOL-BREF’s domains and lower ratings of the TTO and SG. Intraclass correlation coefficients between patient and proxy ratings varied among the four WHOQOL-BREF’s domains, in which levels of agreement were moderate or good for physical capacity (0.69) and low for psychological well-being (0.45), social relationships (0.24), and the environment (0.32). Levels of agreement were extremely low for the TTO (0.0) and SG (0.10). A profile analysis showed that patients’ ratings on the WHOQOL-BREF, on average, were significantly greater than those of their proxies (with a mean difference of 3.07), with a similar distribution of scatter responses (with a mean difference of 0.002) and shape agreement (0.57). Greater variations in the patient-proxy level of agreement appeared in patients who were younger and had more-severe injuries, and also with parent and child proxies. Conclusions To assess the HRQL of patients with a TBI, the level of patient-proxy agreement was adequate for the physical domain but was lower for the social and environmental domains, and the agreement was very low for the TTO and SG. Furthermore, a patient’s age and injury severity, and patient-proxy’ relationship may affect the agreement.