Validation of the QOLIBRI - Quality of Life after Brain Injury questionnaire in patients after TBI in Israel.

BACKGROUND: The QOLIBRI - Quality of Life after Brain Injury questionnaire was developed by the QOLIBRI Task Force (QTF). Our goal was to investigate the applicability, validity and reliability of the QOLIBRI in Israel. METHODS: Validation of the Hebrew questionnaire was performed after it had been administered to 128 adults with traumatic brain injury (TBI), who were between 3 months' and 15 years' post-discharge from rehabilitation. RESULTS: The internal consistency of the QOLIBRI subscales with the QOLIBRI Total scale was high (Cronbach's α = 0.92); the same was true regarding the correlations between each QOLIBRI subscale and its own items (α = 0.92-0.95). Significant and high Pearson's and Spearman's correlations of the QOLIBRI subscales with demographic and clinical characteristics of the GOSE, ADL, HADS, SF-36, and various aspects of self-reported health status were found. Factor analyses (FA) were applied to confirm the validity of the Hebrew version, using the maximum likelihood method. The six subscales explained 100% of the variance. CONCLUSION: The Hebrew version of the QOLIBRI was found to be useful, meaningful and meeting psychometric criteria in persons after TBI in Israel. The findings support the cross-cultural applicability of the QOLIBRI, regardless of cultural and social differences.

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.

Quality of life in persons after traumatic brain injury as self-perceived and as perceived by the caregivers.

The primary aim of the study was to adopt QOLIBRI (quality of life after brain injury) questionnaire in a proxy version (Q-Pro), i.e., to use caregivers for comparison and to evaluate whether TBI patients' judgment corresponds to that of their caregivers since the possible self-awareness deficit of the persons with TBI. A preliminary sample of 19 outpatients with TBI and their proxies was first evaluated with the Patient Competency Rating Scale to assess patients' self-awareness; then they were evaluated with the QOLIBRI Patient version (Q-Pt) and a patient-centered version of the Q-Pro. Subsequently, 55 patients and their caregivers were evaluated using the patient-centered and the caregiver-centered Q-Pro versions. Q-Pt for assessing Quality of Life (QoL) after TBI, as patients' subjective perspective and Q-Pro to assess the QoL of patients as perceived by the caregivers. The majority of patients (62.2%) showed better self-perception of QoL than their proxies; however, patients with low self-awareness were less satisfied than patients with adequate self-awareness. Low self-awareness does not impair the ability of patients with TBI to report on satisfaction with QoL as self-perceived.

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.

Rehabilitation following cerebral anoxia: An assessment of 27 patients.

OBJECTIVES: (1) To evaluate cognitive and emotional impairments, disability and quality-of-life for adults with cerebral anoxia institutionalized in residential care facilities. (2) To evaluate the efficacy of medication, psychotherapy, support group and therapeutic activities. METHODS: Twenty-seven persons with cerebral anoxia were recruited, on average 8 years post-injury. Only 20 went through the whole study. Over three consecutive 2-month periods, they were assessed four times to evaluate: baseline observations (T1-T2), adjustment of their medication (T2-T3); and the effect of psychotherapy, support group and therapeutic activities such as physical and artistic or cultural activities usually proposed in the facilities involved (T3-T4). Examined variables at all time points were cognitive status, anxiety and depression, anosognosia, alexithymia, disability and quality-of-life. RESULTS: All participants exhibited cognitive and emotional impairments comparable to those reported in the literature. Statistical analyses revealed good baseline stability of their condition and no significant effects of changes in medication (between T2 and T3). Conversely, following implementation of psychotherapy, support group and therapeutic activities (between T3 and T4), quality-of-life and social participation were significantly improved. CONCLUSION: Social participation and quality-of-life for persons instutionalized several years after cerebral anoxia were improved by psychotherapeutic and therapeutic activities.

Screening for cognitive and affective dysfunction in patients suspected of mild cognitive impairment.

OBJECTIVE: Disturbances of affect expression and perception, as well as accuracy of predicting memory difficulties, have been reported in various brain dysfunctional groups. Screening tests of higher cerebral functions seldom sample these dimensions. The goal of this study was to determine if patients with mild cognitive impairment (MCI) of the amnestic type would demonstrate impairments in these domains, as well as show expected memory deficits. METHODS: Thirty-nine French-speaking patients with a clinical diagnosis of MCI were compared with 39 age- and education-matched normal functioning individuals on the French translation of the Barrow Neurological Institute Screen for Higher Cerebral Functions (BNIS). Patients and controls also made subjective ratings regarding their cognitive and affective functioning in everyday life. RESULTS: Patients with MCI performed significantly worse than controls on the BNIS subtests sampling memory, orientation, affect expression and perception, and accurate prediction of memory performance. They did not differ on other subtests of the BNIS, as predicted. Poor self-awareness (i.e., inaccurate prediction of the number of words one could recall after distraction) correlated with self-reported deficits in several areas of cognitive and affective functioning. CONCLUSION: This sample of MCI patients demonstrated disturbances not only in memory but also in self-awareness and affect expression and perception on the BNIS. These dimensions should be included in the neuropsychological assessment of patients suspected of MCI.

Performance of a French sample on the French translation of the BNI screen for higher cerebral functions.

OBJECTIVE: To obtain normative data using a French translation of the BNI Screen for Higher Cerebral Functions (BNIS) administered to French-speaking individuals. METHODS: Recruitment and administration of the BNIS to a convenience sample of 167 French-speaking individuals between the ages of 15-84 years. RESULTS: Mean BNIS total score for a French sample was within 1 point of what was observed in the original standardization study using 200 English-speaking controls. Age and education correlated significantly with BNIS scores in a manner reported by other studies. CONCLUSION: The French translation of the BNIS appears to be a reliable method of assessing higher cerebral functioning in French-speaking individuals.

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.

Comparison of subjective and objective assessments of outcome after traumatic brain injury using the International Classification of Functioning, Disability and Health (ICF).

PURPOSE: The aim is to examine two aspects of outcome after traumatic brain injury (TBI). Functional outcome was assessed by the Glasgow Outcome Scale - Extended (GOSE) and by clinician ratings, while health-related quality of life (HRQoL) was assessed by the Quality of Life after Brain Injury (QOLIBRI). METHOD: The GOSE and the QOLIBRI were linked to the International Classification of Functioning, Disability and Health (ICF) to analyse their content. Functional outcome on ICF categories was assessed by rehabilitation clinicians in 55 participants with TBI and was compared to the participants' own judgements of their HRQoL. RESULTS: The QOLIBRI was linked to 42 and the GOSE to 57 two-level ICF categories covering 78% of the categories on the ICF brief core set for TBI. The closest agreement in the views of the professionals and the participants was found on the Physical Problems and Cognition scales of the QOLIBRI. CONCLUSIONS: The problems encountered after TBI are well covered by the QOLIBRI and the GOSE. They capture important domains that are not traditionally sufficiently documented, especially in the domains of interpersonal relationships, social and leisure activities, self and the environment. The findings indicate that they are useful and complementary outcome measures for TBI. In rehabilitation, they can serve as tools in assessment, setting meaningful goals and creating therapeutic alliance.

Community integration after severe traumatic brain injury in adults.

PURPOSE OF REVIEW: Despite being the main cause of death and disability in young adults, traumatic brain injury (TBI) is a rather neglected epidemic. Community integration of persons with TBI was, until recently, insufficiently informed by clinical research. RECENT FINDINGS: To bridge the gap between rehabilitation and community re-entry, the first task is to assess the person, using TBI-specific outcome measures. The second task is to provide re-entry programs, the effectiveness of which is assessed by those measures, using well designed studies. There are very few such studies. However, there are some effective comprehensive programs and others which are specifically targeted dealing mainly with return to work, behavior, and family issues. The complex psychological and environmental components of the disability require individualized and often long-term care. SUMMARY: For persons with severe TBI trying to achieve the best possible community integration a new semiology is required, not just limited to medical care, but also involving social and psychological care that is tailored to the needs of each individual and family, living within his/her environment. Currently, only a minority benefit from well validated programs.

Community integration following severe childhood traumatic brain injury.

PURPOSE OF REVIEW: Severe childhood traumatic brain injury (TBI) is the leading cause of death and acquired disability in children, causing impairments in children's sensory-motor, cognitive and behavioural functioning, with devastating consequences on community integration. Community integration is the ultimate goal of rehabilitation; it is a complex outcome, with many variables contributing to it. RECENT FINDINGS: Community integration and quality of life (QOL) are lower in children who sustained severe TBI at a younger age. Further, a wide range of injury-related, demographic and postinjury factors influence outcomes, and should serve as targets for specific interventions. An increasing number of interventions targeting cognitive, behavioural or family-related issues have been developed, with promising results. SUMMARY: Children should benefit from early integrated patient and family-centred specific care, and receive long-term follow-up until early adulthood, with regular assessments, enabling detection and treatment of any emerging problem, and to ensure the acquisition of independent living skills and stable vocational outcome when this is possible. So far, few well conducted intervention studies are available, but their number is increasing with positive results on the trained skills. Well designed studies using large samples and looking at generalization of the skills in everyday life are needed.

Quality of life after traumatic brain injury: the clinical use of the QOLIBRI, a novel disease-specific instrument.

OBJECTIVE: To report the clinical use of the QOLIBRI, a disease-specific measure of health-related quality-of-life (HRQoL) after traumatic brain injury (TBI). METHODS: The QOLIBRI, with 37 items in six scales (cognition, self, daily life and autonomy, social relationships, emotions and physical problems) was completed by 795 patients in six languages (Finnish, German, Italian, French, English and Dutch). QOLIBRI scores were examined by variables likely to be influenced by rehabilitation interventions and included socio-demographic, functional outcome, health status and mental health variables. RESULTS: The QOLIBRI was self-completed by 73% of participants and 27% completed it in interview. It was sensitive to areas of life amenable to intervention, such as accommodation, work participation, health status (including mental health) and functional outcome. CONCLUSION: The QOLIBRI provides information about patient's subjective perception of his/her HRQoL which supplements clinical measures and measures of functional outcome. It can be applied across different populations and cultures. It allows the identification of personal needs, the prioritization of therapeutic goals and the evaluation of individual progress. It may also be useful in clinical trials and in longitudinal studies of TBI recovery.

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.