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.

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.

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.

Traumatic brain injury research priorities: the Conemaugh International Brain Injury Symposium.

In 2005, an international symposium was convened with over 100 neuroscientists from 13 countries and major research centers to review current research in traumatic brain injury (TBI) and develop a consensus document on research issues and priorities. Four levels of TBI research were the focus of the discussion: basic science, acute care, post-acute neurorehabilitation, and improving quality of life (QOL). Each working group or committee was charged with reviewing current research, discussion and prioritizing future research directions, identifying critical issues that impede research in brain injury, and establishing a research agenda that will drive research over the next five years, leading to significantly improved outcomes and QOL for individuals suffering brain injuries. This symposium was organized at the request of the Congressional Brain Injury Task Force, to follow up on the National Institutes of Health Consensus Conference on TBI as mandated by the TBI ACT of 1996. The goal was to review what progress had been made since the National Institutes of Health (NIH) Consensus Conference, and also to follow up on the 1990's Decade of the Brain Project. The major purpose of the symposium was to provide recommendations to the U.S. Congress on a priority basis for research, treatment, and training in TBI over the next five years.

Guidelines for Quality Management of Apallic Syndrome / Vegetative State.

INTRODUCTION: Epidemiology in Europe shows constantly increasing figures for the apallic syndrome (AS)/vegetative state (VS) as a consequence of advanced rescue, emergency services, intensive care treatment after acute brain damage and high-standard activating home nursing for completely dependent end-stage cases secondary to progressive neurological disease. Management of patients in irreversible permanent AS/VS has been the subject of sustained scientific and moral-legal debate over the past decade. METHODS: A task force on guidelines for quality management of AS/VS was set up under the auspices of the Scientific Panel Neurotraumatology of the European Federation of Neurological Societies to address key issues relating to AS/VS prevalence and quality management. Collection and analysis of scientific data on class II (III) evidence from the literature and recommendations based on the best practice as resulting from the task force members' expertise are in accordance with EFNS Guidance regulations. FINDINGS: The overall incidence of new AS/VS full stage cases all etiology is 0.5-2/100.000 population per year. About one third are traumatic and two thirds non traumatic cases. Increasing figures for hypoxic brain damage and progressive neurological disease have been noticed. The main conceptual criticism is based on the assessment and diagnosis of all different AS/VS stages based solely on behavioural findings without knowing the exact or uniform pathogenesis or neuropathological findings and the uncertainty of clinical assessment due to varying inclusion criteria. No special diagnostics, no specific medical management can be recommended for class II or III AS treatment and rehabilitation. This is why sine qua non diagnostics of the clinical features and appropriate treatment of AS/VS patients of "AS full, remission, defect and end stages" require further professional training and expertise for doctors and rehabilitation personnel. INTERPRETATION: Management of AS aims at the social reintegration of patients or has to guarantee humanistic active nursing if treatment fails. Outcome depends on the cause and duration of AS/VS as well as patient's age. There is no single AS/VS specific laboratory investigation, no specific regimen or stimulating intervention to be recommended for improving higher cerebral functioning. Quality management requires at least 3 years of advanced training and permanent education to gain approval of qualification for AS/VS treatment and expertise. Sine qua non areas covering AS/VS institutions for early and long-term rehabilitation are required on a population base (prevalence of 2/100.000/year) to quicken functional restoration and to prevent or treat complications. Caring homes are needed for respectful humane nursing including basal sensor-motor stimulating techniques. Passive euthanasia is considered an act of mercy by physicians in terms of withholding treatment; however, ethical and legal issues with regard to withdrawal of nutrition and hydration and end of life discussions raise deep concerns. The aim of the guideline is to provide management guidance (on the best medical evidence class II and III or task force expertise) for neurologists, neurosurgeons, other physicians working with AS/VS patients, neurorehabilitation personnel, patients, next-of-kin, and health authorities.

Guidelines for the pharmacologic treatment of neurobehavioral sequelae of traumatic brain injury.

There is currently a lack of evidence-based guidelines to guide the pharmacological treatment of neurobehavioral problems that commonly occur after traumatic brain injury (TBI). It was our objective to review the current literature on the pharmacological treatment of neurobehavioral problems after traumatic brain injury in three key areas: aggression, cognitive disorders, and affective disorders/anxiety/ psychosis. Three panels of leading researchers in the field of brain injury were formed to review the current literature on pharmacological treatment for TBI sequelae in the topic areas of affective/anxiety/ psychotic disorders, cognitive disorders, and aggression. A comprehensive Medline literature search was performed by each group to establish the groups of pertinent articles. Additional articles were obtained from bibliography searches of the primary articles. Group members then independently reviewed the articles and established a consensus rating. Despite reviewing a significant number of studies on drug treatment of neurobehavioral sequelae after TBI, the quality of evidence did not support any treatment standards and few guidelines due to a number of recurrent methodological problems. Guidelines were established for the use of methylphenidate in the treatment of deficits in attention and speed of information processing, as well as for the use of beta-blockers for the treatment of aggression following TBI. Options were recommended in the treatment of depression, bipolar disorder/mania, psychosis, aggression, general cognitive functions, and deficits in attention, speed of processing, and memory after TBI. The evidence-based guidelines and options established by this working group may help to guide the pharmacological treatment of the person experiencing neurobehavioral sequelae following TBI. There is a clear need for well-designed randomized controlled trials in the treatment of these common problems after TBI in order to establish definitive treatment standards for this patient population.