Consensus-Based Development of a Global Registry for Traumatic Brain Injury: Establishment, Protocol, and Implementation.
Journal
Neurosurgery
ISSN: 1524-4040
Titre abrégé: Neurosurgery
Pays: United States
ID NLM: 7802914
Informations de publication
Date de publication:
25 Sep 2023
25 Sep 2023
Historique:
received:
20
02
2023
accepted:
05
07
2023
medline:
25
9
2023
pubmed:
25
9
2023
entrez:
25
9
2023
Statut:
aheadofprint
Résumé
Global disparity exists in the demographics, pathology, management, and outcomes of surgically treated traumatic brain injury (TBI). However, the factors underlying these differences, including intervention effectiveness, remain unclear. Establishing a more accurate global picture of the burden of TBI represents a challenging task requiring systematic and ongoing data collection of patients with TBI across all management modalities. The objective of this study was to establish a global registry that would enable local service benchmarking against a global standard, identification of unmet need in TBI management, and its evidence-based prioritization in policymaking. The registry was developed in an iterative consensus-based manner by a panel of neurotrauma professionals. Proposed registry objectives, structure, and data points were established in 2 international multidisciplinary neurotrauma meetings, after which a survey consisting of the same data points was circulated within the global neurotrauma community. The survey results were disseminated in a final meeting to reach a consensus on the most pertinent registry variables. A total of 156 professionals from 53 countries, including both high-income countries and low- and middle-income countries, responded to the survey. The final consensus-based registry includes patients with TBI who required neurosurgical admission, a neurosurgical procedure, or a critical care admission. The data set comprised clinically pertinent information on demographics, injury characteristics, imaging, treatments, and short-term outcomes. Based on the consensus, the Global Epidemiology and Outcomes following Traumatic Brain Injury (GEO-TBI) registry was established. The GEO-TBI registry will enable high-quality data collection, clinical auditing, and research activity, and it is supported by the World Federation of Neurosurgical Societies and the National Institute of Health Research Global Health Program. The GEO-TBI registry (https://geotbi.org) is now open for participant site recruitment. Any center involved in TBI management is welcome to join the collaboration to access the registry.
Sections du résumé
BACKGROUND AND OBJECTIVES
OBJECTIVE
Global disparity exists in the demographics, pathology, management, and outcomes of surgically treated traumatic brain injury (TBI). However, the factors underlying these differences, including intervention effectiveness, remain unclear. Establishing a more accurate global picture of the burden of TBI represents a challenging task requiring systematic and ongoing data collection of patients with TBI across all management modalities. The objective of this study was to establish a global registry that would enable local service benchmarking against a global standard, identification of unmet need in TBI management, and its evidence-based prioritization in policymaking.
METHODS
METHODS
The registry was developed in an iterative consensus-based manner by a panel of neurotrauma professionals. Proposed registry objectives, structure, and data points were established in 2 international multidisciplinary neurotrauma meetings, after which a survey consisting of the same data points was circulated within the global neurotrauma community. The survey results were disseminated in a final meeting to reach a consensus on the most pertinent registry variables.
RESULTS
RESULTS
A total of 156 professionals from 53 countries, including both high-income countries and low- and middle-income countries, responded to the survey. The final consensus-based registry includes patients with TBI who required neurosurgical admission, a neurosurgical procedure, or a critical care admission. The data set comprised clinically pertinent information on demographics, injury characteristics, imaging, treatments, and short-term outcomes. Based on the consensus, the Global Epidemiology and Outcomes following Traumatic Brain Injury (GEO-TBI) registry was established.
CONCLUSION
CONCLUSIONS
The GEO-TBI registry will enable high-quality data collection, clinical auditing, and research activity, and it is supported by the World Federation of Neurosurgical Societies and the National Institute of Health Research Global Health Program. The GEO-TBI registry (https://geotbi.org) is now open for participant site recruitment. Any center involved in TBI management is welcome to join the collaboration to access the registry.
Identifiants
pubmed: 37747225
doi: 10.1227/neu.0000000000002661
pii: 00006123-990000000-00902
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Subventions
Organisme : Suomen Lääketieteen Säätiö
ID : 4268
Organisme : Suomen Kulttuurirahasto
ID : 00221201
Informations de copyright
Copyright © Congress of Neurological Surgeons 2023. All rights reserved.
Références
Maas AIR, Menon DK, Adelson PD, et al. Traumatic brain injury: integrated approaches to improve prevention, clinical care, and research. Lancet Neurol. 2017;16(12):987-1048.
Segui-Gomez M, MacKenzie EJ. Measuring the public health impact of injuries. Epidemiol Rev. 2003;25(1):3-19.
Lozano R, Naghavi M, Foreman K, et al. Global and regional mortality from 235 causes of death for 20 age groups in 1990 and 2010: a systematic analysis for the Global Burden of Disease Study 2010. Lancet. 2012;380(9859):2095-2128.
Dewan MC, Rattani A, Gupta S, et al. Estimating the global incidence of traumatic brain injury. J Neurosurg. 2018;130(4):1080-1097.
Rubiano AM, Carney N, Chesnut R, Puyana JC. Global neurotrauma research challenges and opportunities. Nature. 2015;527(7578):S193-S197.
Coronado VG, Xu L, Basavaraju SV, et al. Surveillance for traumatic brain injury-related deaths—United States, 1997-2007. MMWR Surveill Summ. 2011;60(5):1-32.
GBD 2016 Traumatic Brain Injury and Spinal Cord Injury Collaborators. Global, regional, and national burden of traumatic brain injury and spinal cord injury, 1990-2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Neurol. 2019;18(1):56-87.
The Global Health Observatory. Global Health Estimates: Leading Causes of Death. 2020. Accessed August 17, 2022. https://www.who.int/data/gho/data/themes/mortality-and-global-health-estimates/ghe-leading-causes-of-death
Tropeano MP, Spaggiari R, Ileyassoff H, et al. A comparison of publication to TBI burden ratio of low- and middle-income countries versus high-income countries: how can we improve worldwide care of TBI? Neurosurg Focus. 2019;47(5):E5.
Redelmeier DA, Tibshirani RJ, Evans L. Traffic-law enforcement and risk of death from motor-vehicle crashes: case-crossover study. Lancet. 2003;361(9376):2177-2182.
Rivara FP, Grossman DC, Cummings P. Injury prevention. N Engl J Med. 1997;337(8):543-548.
Porru S, Calza S, Arici C. Prevention of occupational injuries: evidence for effective good practices in foundries. J Saf Res. 2017;60:53-69.
Hyder AA, Wunderlich CA, Puvanachandra P, Gururaj G, Kobusingye OC. The impact of traumatic brain injuries: a global perspective. NeuroRehabilitation. 2007;22(5):341-353.
Roozenbeek B, Maas AIR, Menon DK. Changing patterns in the epidemiology of traumatic brain injury. Nat Rev Neurol. 2013;9(4):231-236.
Hawryluk GWJ, Manley GT. Classification of traumatic brain injury: past, present, and future. Handb Clin Neurol. 2015;127:15-21.
Clark D, Joannides A, Adeleye AO, et al. Casemix, management, and mortality of patients receiving emergency neurosurgery for traumatic brain injury in the Global Neurotrauma Outcomes Study: a prospective observational cohort study. Lancet Neurol. 2022;21(5):438-449.
Bonow RH, Vavilala MS. Disparities in neurosurgical care for traumatic brain injury. Lancet Neurol. 2022;21(5):398-399.
Steyerberg EW, Wiegers E, Sewalt C, et al. Case-mix, care pathways, and outcomes in patients with traumatic brain injury in CENTER-TBI: a European prospective, multicentre, longitudinal, cohort study. Lancet Neurol. 2019;18(10):923-934.
Yue JK, Vassar MJ, Lingsma HF, et al. Transforming research and clinical knowledge in traumatic brain injury pilot: multicenter implementation of the common data elements for traumatic brain injury. J Neurotrauma. 2013;30(22):1831-1844.
Eysenbach G. Improving the quality of Web surveys: the Checklist for reporting results of Internet E-Surveys (CHERRIES). J Med Internet Res. 2004;6(3):e34.
AbouZahr C, Boerma T. Health information systems: the foundations of public health. Bull World Health Organ. 2005;83(8):578-583.
Kruk ME, Chukwuma A, Mbaruku G, Leslie HH. Variation in quality of primary-care services in Kenya, Malawi, Namibia, Rwanda, Senegal, Uganda and the United Republic of Tanzania. Bull World Health Organ. 2017;95(6):408-418.
Cassidy JD, Carroll LJ, Peloso PM, et al. Incidence, risk factors and prevention of mild traumatic brain injury: results of the WHO collaborating centre task force on mild traumatic brain injury. J Rehabil Med. 2004;36:28-60.
Dikmen S, Machamer J, Temkin N. Mild traumatic brain injury: longitudinal study of cognition, functional status, and post-traumatic symptoms. J Neurotrauma. 2017;34(8):1524-1530.
Mikolić A, Polinder S, Steyerberg EW, et al. Prediction of global functional outcome and post-concussive symptoms after mild traumatic brain injury: external validation of prognostic models in the Collaborative European Neurotrauma Effectiveness Research in Traumatic Brain Injury (CENTER-TBI) Study. J Neurotrauma. 2021;38(2):196-209.
van der Naalt J, Timmerman ME, de Koning ME, et al. Early predictors of outcome after mild traumatic brain injury (UPFRONT): an observational cohort study. Lancet Neurol. 2017;16(7):532-540.
Gennarelli TA, Champion HR, Copes WS, Sacco WJ. Comparison of mortality, morbidity, and severity of 59,713 head injured patients with 114,447 patients with extracranial injuries. J Trauma Inj Infect Crit Care. 1994;37(6):962-968.
Marshall LF, Gautille T, Klauber MR, et al. The outcome of severe closed head injury. J Neurosurg. 1991;75(Supplement):s28-s36.
Healey C, Osler TM, Rogers FB, et al. Improving the Glasgow Coma Scale score: motor score alone is a better predictor. J Trauma Inj Infect Crit Care. 2003;54(4):671-680; discussion 678-680.
Yue JK, Satris GG, Dalle Ore CL, et al. Polytrauma is associated with increased three- and six-month disability after traumatic brain injury: a TRACK-TBI Pilot Study. Neurotrauma Rep. 2020;1(1):32-41.
Marmarou A, Lu J, Butcher I, et al. Prognostic value of the Glasgow Coma Scale and pupil reactivity in traumatic brain injury assessed pre-hospital and on enrollment: an IMPACT analysis. J Neurotrauma. 2007;24(2):270-280.
Maas AIR, Hukkelhoven CWPM, Marshall LF, Steyerberg EW. Prediction of outcome in traumatic brain injury with computed tomographic characteristics: a comparison between the computed tomographic classification and combinations of computed tomographic predictors. Neurosurgery. 2005;57(6):1173-1182; discussion 1173-1182.
Raj R, Siironen J, Skrifvars MB, Hernesniemi J, Kivisaari R. Predicting outcome in traumatic brain injury: development of a novel computerized tomography classification system (Helsinki computerized tomography score). Neurosurgery. 2014;75(6):632-647; discussion 646-647.
Chesnut RM, Marshall LF, Klauber MR, et al. The role of secondary brain injury in determining outcome from severe head injury. J Trauma Inj Infect Crit Care. 1993;34(2):216-222.
McHugh GS, Engel DC, Butcher I, et al. Prognostic value of secondary insults in traumatic brain injury: results from the IMPACT study. J Neurotrauma. 2007;24(2):287-293.
Chi JH, Knudson MM, Vassar MJ, et al. Prehospital hypoxia affects outcome in patients with traumatic brain injury: a prospective multicenter study. J Trauma Inj Infect Crit Care. 2006;61(5):1134-1141.
Härtl R, Gerber LM, Iacono L, Ni Q, Lyons K, Ghajar J. Direct transport within an organized state trauma system reduces mortality in patients with severe traumatic brain injury. J Trauma Inj Infect Crit Care. 2006;60(6):1250-1256; discussion 1256.
Pickering A, Cooper K, Harnan S, Sutton A, Mason S, Nicholl J. Impact of prehospital transfer strategies in major trauma and head injury: systematic review, meta-analysis, and recommendations for study design. J Trauma Acute Care Surg. 2015;78(1):164-177.
Sewalt CA, Gravesteijn BY, Menon D, et al. Primary versus early secondary referral to a specialized neurotrauma center in patients with moderate/severe traumatic brain injury: a CENTER TBI study. Scand J Trauma Resusc Emerg Med. 2021;29(1):113.
Yadav H, Shah D, Sayed S, Horton S, Schroeder LF. Availability of essential diagnostics in ten low-income and middle-income countries: results from national health facility surveys. Lancet Global Health. 2021;9(11):e1553-e1560.
Hricak H, Abdel-Wahab M, Atun R, et al. Medical imaging and nuclear medicine: a Lancet Oncology Commission. Lancet Oncol. 2021;22(4):e136–e172.
Lall D, Engel N, Devadasan N, Horstman K, Criel B. Models of care for chronic conditions in low/middle-income countries: a ‘best fit’ framework synthesis. BMJ Glob Health. 2018;3(6):e001077.
McMillan TM, Weir CJ, Ireland A, Stewart E. The Glasgow Outcome at Discharge Scale: an inpatient assessment of disability after brain injury. J Neurotrauma. 2013;30(11):970-974.
Bhangu A, Ademuyiwa AO, Aguilera ML, et al. Surgical site infection after gastrointestinal surgery in high-income, middle-income, and low-income countries: a prospective, international, multicentre cohort study. Lancet Infect Dis. 2018;18(5):516-525.
GlobalSurg Collaborative. Mortality of emergency abdominal surgery in high-middle- and low-income countries. Br J Surg. 2016;103(8):971-988.
Griswold DP, Khan AA, Chao TE, et al. Neurosurgical randomized trials in low- and middle-income countries. Neurosurgery. 2020;87(3):476-483.
Akhlaq A, McKinstry B, Muhammad KB, Sheikh A. Barriers and facilitators to health information exchange in low- and middle-income country settings: a systematic review. Health Policy Plan. 2016;31(9):1310-1325.
Lazareff J, Punchak M. Cost-effectiveness of short-term neurosurgical missions relative to other surgical specialties. Surg Neurol Int. 2017;8(1):37.
Waithira N, Mutinda B, Cheah PY. Data management and sharing policy: the first step towards promoting data sharing. BMC Med. 2019;17(1):80.
Bezuidenhout L, Chakauya E. Hidden concerns of sharing research data by low/middle-income country scientists. Global Bioeth. 2018;29(1):39-54.
Beran D, Byass P, Gbakima A, et al. Research capacity building-obligations for global health partners. Lancet Global Health. 2017;5(6):e567–e568.
Westland JC. Information loss and bias in likert survey responses. PLoS ONE. 2022;17(7):e0271949.