A concerted effort to tackle the global health problem posed by traumatic brain injury (TBI) is long overdue. TBI is a public health challenge of vast, but insufficiently recognised, proportions. Worldwide, more than 50 million people have a TBI each year, and it is estimated that about half the world's population will have one or more TBIs over their lifetime. TBI is the leading cause of mortality in young adults and a major cause of death and disability across all ages in all countries, with a disproportionate burden of disability and death occurring in low-income and middle-income countries (LMICs). It has been estimated that TBI costs the global economy approximately $US400 billion annually. Deficiencies in prevention, care, and research urgently need to be addressed to reduce the huge burden and societal costs of TBI. This Commission highlights priorities and provides expert recommendations for all stakeholders—policy makers, funders, health-care professionals, researchers, and patient representatives—on clinical and research strategies to reduce this growing public health problem and improve the lives of people with TBI.Additional co-authors: Endre Czeiter, Marek Czosnyka, Ramon Diaz-Arrastia, Jens P Dreier, Ann-Christine Duhaime, Ari Ercole, Thomas A van Essen, Valery L Feigin, Guoyi Gao, Joseph Giacino, Laura E Gonzalez-Lara, Russell L Gruen, Deepak Gupta, Jed A Hartings, Sean Hill, Ji-yao Jiang, Naomi Ketharanathan, Erwin J O Kompanje, Linda Lanyon, Steven Laureys, Fiona Lecky, Harvey Levin, Hester F Lingsma, Marc Maegele, Marek Majdan, Geoffrey Manley, Jill Marsteller, Luciana Mascia, Charles McFadyen, Stefania Mondello, Virginia Newcombe, Aarno Palotie, Paul M Parizel, Wilco Peul, James Piercy, Suzanne Polinder, Louis Puybasset, Todd E Rasmussen, Rolf Rossaint, Peter Smielewski, Jeannette Söderberg, Simon J Stanworth, Murray B Stein, Nicole von Steinbüchel, William Stewart, Ewout W Steyerberg, Nino Stocchetti, Anneliese Synnot, Braden Te Ao, Olli Tenovuo, Alice Theadom, Dick Tibboel, Walter Videtta, Kevin K W Wang, W Huw Williams, Kristine Yaffe for the InTBIR Participants and Investigator
In November 2017, the Lancet Neurology Commission on Traumatic Brain Injury (TBI) highlighted existing deficiencies in epidemiology, patient characterization, identifying best practice, outcome assessment, and evidence generation. The Commission concluded that C needed to address deficiencies in prevention , and made a recommendation for large collaborative studies which could provide the framework for precision medicine and comparative effectiveness research (CER).
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.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 multi-centre validation studies. The first study with eight language versions of the QOLIBRI recruited 1528 participants with TBI and the second with six language versions 921 participants. The data from 795 participants from the second study who had complete GCS and GOS data were used to finalise the instrument.The final version of the QOLIBRI consists of 37 items in six scales. 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, = .75 to .89, test-retest reliability, r tt = .78 to .85). Test-retest reliability (r tt = 0.68 to 0.87) as well as internal consistency ( = .81 to .91) was 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 modelling.The QOLIBRI is a new cross-culturally developed instrument for assessing HRQoL after TBI that fulfils standard psychometric criteria. It is potentially useful for clinicians and researchers conducting clinical trials, assessing the impact of rehabilitation or other interventions, or carrying out epidemiological surveys.
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.
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