Abstract
Measurement of health-related quality of life (HRQL) is essential to quantify the subjective burden of traumatic brain injury (TBI) in survivors. We performed a systematic review of HRQL studies in TBI to evaluate study design, instruments used, methodological quality, and outcome. Fifty-eight studies were included, showing large variation in HRQL instruments and assessment time points used. The Short Form-36 (SF-36) was most frequently used. A high prevalence of health problems during and after the first year of TBI was a common finding of the studies included. In the long term, patients with a TBI still showed large deficits from full recovery compared to population norms. Positive results for internal consistency and interpretability of the SF-36 were reported in validity studies. The Quality of Life after Brain Injury instrument (QOLIBRI), European Brain Injury Questionnaire (EBIQ), Child Health Questionnaire (CHQ), and the World Health Organization Quality of Life short version (WHOQOL-BREF) showed positive results, but evidence was limited. Meta-analysis of SF-36 showed that TBI outcome is heterogeneous, encompassing a broad spectrum of HRQL, with most problems reported in the physical, emotional, and social functioning domain. The use of SF-36 in combination with a TBI-specific instrument, i.e., QOLIBRI, seems promising. Consensus on preferred methodologies of HRQL measurement in TBI would facilitate comparability across studies, resulting in improved insights in recovery patterns and better estimates of the burden of TBI.Electronic supplementary materialThe online version of this article (doi:10.1186/s12963-015-0037-1) contains supplementary material, which is available to authorized users.
Highlights
It is important to obtain more insight in the measurement of health-related quality of life (HRQL) of patients with a traumatic brain injury (TBI), since there is a great need to document people’s pathways to recovery and to quantify the impact of TBI on population health over time
Of the 49 studies included in our systematic review, 10 studies assessed HRQL in children only [21,22,23,24,25,26,27,28,29,30,31]
When examining whether the choice of instrument depended on the severity level of the study population we found that the three studies only focusing on severe TBI all used a different measure (SARAH network Quality of Life questionnaire (SARAH), Sickness Impact Profile (SIP), and Short Form-36 (SF-36)), but that from the eight mild TBI studies, seven of them used the SF-36
Summary
It is important to obtain more insight in the measurement of health-related quality of life (HRQL) of patients with a traumatic brain injury (TBI), since there is a great need to document people’s pathways to recovery and to quantify the impact of TBI on population health over time. Quality of life is defined by the WHO as: “the individuals’ perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns It is a broad-ranging concept affected in a Polinder et al Population Health Metrics (2015) 13:4 complex way by the persons’ physical health, psychological state, level of independence, social relationships, personal beliefs and their relationship to salient features of their environment” [7]. From this definition, it becomes clear that the key factor in quality of life is the perception by the individual of his functioning. It may be evident that quality of life is often confused with the health status
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