Self-awareness and health-related quality of life after traumatic brain injury.

OBJECTIVE: To investigate the relations among self-awareness (SA), impaired SA, and health-related quality of life (HRQOL) after traumatic brain injury (TBI). PARTICIPANTS: One hundred forty-one adults hospitalized with TBI and their significant others from a cross-sectional multicenter study. Using Glasgow Coma Scale classification, 32 participants had severe injuries, 29 moderate, 44 mild, and 25 complicated mild TBI. MEASURES: Patient Competency Rating Scale for Neurorehabilitation; Short Form-36 Health Survey; Cognitive Quality of Life; Quality Of Life after Brain Injury; Hospital Anxiety and Depression Scale; Profile of Mood States; Glasgow Outcome Scale Extended. METHOD: Patient Competency Rating Scale for Neurorehabilitation ratings made by participants and their significant others were used to assess SA and discrepancies between the 2 ratings were used to define impaired SA. RESULTS: Significant associations were identified between SA and HRQOL, anxiety, depression, and severity of injury. Participants with and without impaired SA differed in cognitive HRQOL and leisure activities. Using multiple regression, no direct predictors of SA were identified, although interaction effects were observed. CONCLUSION: After TBI, lower SA is associated with higher estimates of HRQOL, particularly in the cognitive domain. Although the associations are modest, the assessment of SA should play a role in the interpretation of reported HRQOL after TBI.

QOLIBRI overall scale: a brief index of health-related quality of life after traumatic brain injury.

BACKGROUND: The quality of life after brain injury (QOLIBRI) scale is a recently developed instrument that provides a profile of health-related quality of life (HRQoL) in domains typically affected by brain injury. However, for global assessment it is desirable to have a brief summary measure. This study examined a 6-item QOLIBRI overall scale (QOLIBRI-OS), and considered whether it could provide an index of HRQoL after traumatic brain injury (TBI). METHODS: The properties of the QOLIBRI-OS were studied in a sample of 792 participants with TBI recruited from centres in nine countries covering six languages. An examination of construct validity was undertaken on a subsample of 153 participants recruited in Germany who had been assessed on two relevant brief quality of life measures, the satisfaction with life scale and the quality of life visual analogue scale. RESULTS: The reliability of the QOLIBRI-OS was good (Cronbach's α=0.86, test-retest reliability =0.81) and similar in participants with higher and lower cognitive performance. Factor analysis indicated that the scale is unidimensional. Rasch analysis also showed a satisfactory fit with this model. The QOLIBRI-OS correlates highly with the total score from the full QOLIBRI scale (r=0.87). Moderate to strong relationships were found among the QOLIBRI-OS and the extended glasgow outcome scale, short-form-36, and hospital anxiety and depression scale (r=0.54 to -0.76). The QOLIBRI-OS showed good construct validity in the TBI group. CONCLUSIONS: The QOLIBRI-OS assesses a similar construct to the QOLIBRI total score and can be used as a brief index of HRQoL for TBI.

Interpreting Quality of Life after Brain Injury Scores: Cross-Walk with the Short Form-36.

The Quality of Life after Brain Injury (QOLIBRI) instruments are traumatic brain injury (TBI)-specific assessments of health-related quality of life (HRQoL), with established validity and reliability. The purpose of the study is to help improve the interpretability of the two QOLIBRI summary scores (the QOLIBRI Total score and the QOLBRI Overall Scale [OS] score). An analysis was conducted of 761 patients with TBI who took part in the QOLIBRI validation studies. A cross-walk between QOLIBRI scores and the SF-36 Mental Component Summary norm-based scoring system was performed using geometric mean regression analysis. The exercise supports a previous suggestion that QOLIBRI Total scores <60 indicate low or impaired HRQoL and indicate that the corresponding score on the QOLIBRI-OS is <52. The percentage of cases in the sample that fell into the "impaired HRQoL" category was 36% for the Mental Component Summary, 38% for the QOLIBRI Total, and 39% for the QOLIBRI-OS. Relationships between the QOLIBRI scales and the Glasgow Outcome Scale-Extended (GOSE), as a measure of global function, are presented in the form of means and standard deviations that allow comparison with other studies, and data on age and sex are presented for the QOLIBRI-OS. While bearing in mind the potential imprecision of the comparison, the findings provide a framework for evaluating QOLIBRI summary scores in relation to generic HRQoL that improves their interpretability.

German validation of Quality of Life after Brain Injury (QOLIBRI) assessment and associated factors.

The consequences of traumatic brain injury (TBI) for health-related quality of life (HRQoL) are still poorly understood, and no TBI-specific instrument has hitherto been available. This paper describes in detail the psychometrics and validity of the German version of an internationally developed, self-rated HRQoL tool after TBI-the QOLIBRI (Quality of Life after Brain Injury). Factors associated with HRQoL, such as the impact of cognitive status and awareness, are specifically reported. One-hundred seventy-two participants after TBI were recruited from the records of acute clinics, most of whom having a Glasgow Coma Scale (GCS) 24-hour worst score and a Glasgow Outcome Scale (GOSE) score. Participants had severe (24%), moderate (11%) and mild (56%) injuries as assessed on the GCS, 3 months to 15 years post-injury. The QOLIBRI uses 37 items to measure "satisfaction" in the areas of "Cognition", "Self", "Daily Life and Autonomy", and "Social Relationships", and "feeling bothered" by "Emotions"and "Physical Problems". The scales meet standard psychometric criteria (α = .84 to .96; intra-class correlation-ICC = .72 to .91). ICCs (0.68 to 0.90) and αs (.83 to .96) were also good in a subgroup of participants with lower cognitive performance. The six-subscale structure of the international sample was reproduced for the German version using confirmatory factor analyses and Rasch analysis. Scale validity was supported by systematic relationships observed between the QOLIBRI and the GOSE, Patient Competency Rating Scale for Neurorehabilitation (PCRS-NR), Hospital Anxiety and Depression Scale (HADS), Profile of Mood States (POMS), Short Form 36 (SF-36), and Satisfaction with Life Scale (SWLS). The German QOLIBRI contains novel information not provided by other currently available measures and has good psychometric criteria. It is potentially useful for clinicians and researchers, in post-acute and rehabilitation studies, on a group and individual level.

Assessment of Health-Related Quality of Life after TBI: Comparison of a Disease-Specific (QOLIBRI) with a Generic (SF-36) Instrument.

Psychosocial, emotional, and physical problems can emerge after traumatic brain injury (TBI), potentially impacting health-related quality of life (HRQoL). Until now, however, neither the discriminatory power of disease-specific (QOLIBRI) and generic (SF-36) HRQoL nor their correlates have been compared in detail. These aspects as well as some psychometric item characteristics were studied in a sample of 795 TBI survivors. The Shannon H (') index absolute informativity, as an indicator of an instrument's power to differentiate between individuals within a specific group or health state, was investigated. Psychometric performance of the two instruments was predominantly good, generally higher, and more homogenous for the QOLIBRI than for the SF-36 subscales. Notably, the SF-36 "Role Physical," "Role Emotional," and "Social Functioning" subscales showed less satisfactory discriminatory power than all other dimensions or the sum scores of both instruments. The absolute informativity of disease-specific as well as generic HRQoL instruments concerning the different groups defined by different correlates differed significantly. When the focus is on how a certain subscale or sum score differentiates between individuals in one specific dimension/health state, the QOLIBRI can be recommended as the preferable instrument.

Coping strategies in individuals after traumatic brain injury: associations with health-related quality of life.

PURPOSE: This study investigates coping strategies after traumatic brain injury (TBI) and their associations with health-related quality of life (HRQoL). METHODS: Participants were 141 adults followed up 3 months to 15 years after TBI of all severity degrees. Coping was assessed by the Freiburg Questionnaire of Coping with Illness (FQCI) and HRQoL by the Quality of Life after Brain Injury (QOLIBRI) scale and the Short Form-36 Health Survey (SF-36). Coping dimensions were extracted by principal component analysis. Multiple linear regression analysis was used to identify predictors of coping strategies. RESULTS: Two factors for coping after TBI were extracted: Action/Distraction and Trivialisation/Resignation. The Trivialisation/Resignation strategy was negatively correlated with all aspects of HRQoL, while relationships with the Action/Distraction strategy were positive and significant for two domains. These two factors also showed significant associations with anxiety, depression, recovery, cognitive status, mood states and trauma severity. Multiple regression analysis identified recovery status as a predictor for the maladaptive Trivialisation/Resignation strategy. CONCLUSION: Two coping factors were identified, which were differentially associated with HRQoL. Maladaptive coping strategies play a particularly important role, and less reliance on such strategies is associated with better HRQoL; use of adaptive strategies should correspondingly be fostered. IMPLICATIONS FOR REHABILITATION: This study highlights the relationship of coping strategies and HRQoL after TBI. For the assessment of HRQoL a novel disease-specific instrument was applied, that provides in detail TBI-relevant aspects of well-being and HRQoL. Individuals after TBI use two main sets of coping strategies that are differentially associated with HRQoL (and clinical variables). One is adaptive and the other maladaptive for HRQoL after TBI. Maladaptive and adaptive coping strategies used by the individual should be identified and considered in rehabilitation efforts to improve HRQoL after TBI.

Quality of Life after Brain Injury (QOLIBRI): scale development and metric properties.

The consequences of traumatic brain injury (TBI) for health-related quality of life (HRQoL) are poorly investigated, and a TBI-specific instrument has not previously been available. The cross-cultural development of a new measure to assess HRQoL after TBI is described here. An international TBI Task Force derived a conceptual model from previous work, constructed an initial item bank of 148 items, and then reduced the item set through two successive multicenter validation studies. The first study, with eight language versions of the QOLIBRI, recruited 1528 participants with TBI, and the second with six language versions, recruited 921 participants. The data from 795 participants from the second study who had complete Glasgow Coma Scale (GCS) and Glasgow Outcome Scale (GOS) data were used to finalize the instrument. The final version of the QOLIBRI consists of 37 items in six scales (see Appendix ). Satisfaction is assessed in the areas of "Cognition," "Self," "Daily Life and Autonomy," and "Social Relationships," and feeling bothered by "Emotions," and "Physical Problems." The QOLIBRI scales meet standard psychometric criteria (internal consistency, alpha = 0.75-0.89, test-retest reliability, r(tt) = 0.78-0.85). Test-retest reliability (r(tt) = 0.68-0.87) as well as internal consistency (alpha = 0.81-0.91) were also good in a subgroup of participants with lower cognitive performance. Although there is one strong HRQoL factor, a six-scale structure explaining additional variance was validated by exploratory and confirmatory factor analyses, and with Rasch modeling. The QOLIBRI is a new cross-culturally developed instrument for assessing HRQoL after TBI that fulfills standard psychometric criteria. It is potentially useful for clinicians and researchers conducting clinical trials, for assessing the impact of rehabilitation or other interventions, and for carrying out epidemiological surveys.

Quality of Life after Brain Injury (QOLIBRI): scale validity and correlates of quality of life.

The QOLIBRI (Quality of Life after Brain Injury) is a novel health-related quality-of-life (HRQoL) instrument specifically developed for traumatic brain injury (TBI). It provides a profile of HRQoL in six domains together with an overall score. Scale validity and factors associated with HRQoL were investigated in a multi-center international study. A total of 795 adults with brain injury were studied from 3 months to 15 years post-injury. The majority of participants (58%) had severe injuries as assessed by 24-h worst Glasgow Coma Scale (GCS) score. Systematic relationships were observed between the QOLIBRI and the Glasgow Outcome Scale-Extended (GOSE), Hospital Anxiety and Depression Scale (HADS), and SF-36. Within each scale patients with disability reported having low HRQoL in two to three times as many areas as those who had made a good recovery. The main correlates of the total QOLIBRI score were emotional state (HADS depression and anxiety), functional status (amount of help needed and outcome on the GOSE), and comorbid health conditions. Together these five variables accounted for 58% of the variance in total QOLIBRI scores. The QOLIBRI is the first tool developed to assess disease-specific HRQoL in brain injury, and it contains novel information not given by other currently available assessments.