Health-related quality of life in persons after traumatic brain injury: a systematic review of the literature

Abstract

BackgroundTraumatic brain injury (TBI) results in significant mortality and long-term disability. Valid health-related quality of life (HRQL) measures are necessary to quantify the burden of TBI, functional impairment in survivors, and the impact of interventions being studied. Numerous different HRQL instruments are available, but the validity for use in patients with TBI is insufficiently clear. We performed a systematic review of studies measuring HRQL in patients with TBI to evaluate the measurement properties of HRQL instruments in TBI. MethodsTBI studies measuring HRQL (1991–2012) were identified in Medline (PubMed), Web of Science, and Embase. Articles were collated by study design, HRQL instrument, timing of assessment(s), and HRQL outcomes by two reviewers. Methodological quality of measurement properties was evaluated with the COnsensus-based Standards for selection of health status Measurement INstruments (COSMIN) checklist. FindingsA total of 53 HRQL studies were included (45 descriptive and eight validation studies of a HRQL instrument), including 18 different HRQL instruments. The 36-item short form (SF-36) was used in 26 studies; paediatric quality of life inventory (PedsQL) in five; EQ-5D and sickness impact profile (SIP) in five; WHO quality of life assessment instrument, brief version (WHOQOL-BREF) and perceived quality of life scale (PQOL) in three; and quality of life after brain injury (QOLIBRI) and child health questionnaire (CHQ) in two studies. Other instruments were used once. Assessment timepoints of HRQL ranged from baseline to 24 years post-TBI. 16 studies performed multiple assessments. The validity of the SF-36 was most frequently evaluated and showed positive results for internal consistency and validity. Other instruments (QOLIBRI, EBIQ, CHQ, WHOQOL-BREF) showed positive results as well, but evidence for each measurement property was limited. InterpretationThere is large variation in use of HRQL instruments and assessment timepoints. This impedes comparison of HRQL outcomes between studies aiming to quantify the impact of TBI on population health over time. The use of the SF-36 in combination with a TBI-specific instrument seems promising. Development of guidelines for the measurement of HRQL in TBI would facilitate comparability across studies, resulting in improved burden of TBI estimates. FundingPersonal Fellowship of Department of Public Health, Erasmus MC, Rotterdam, Netherlands.