Consensus-Based Development of a Global Registry for Traumatic Brain Injury: Establishment, Protocol, and Implementation.

BACKGROUND AND OBJECTIVES: 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: 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: 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: 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.

An international, prospective observational study on traumatic brain injury epidemiology study protocol: GEO-TBI: Incidence.

Background: The epidemiology of traumatic brain injury (TBI) is unclear - it is estimated to affect 27-69 million individuals yearly with the bulk of the TBI burden in low-to-middle income countries (LMICs). Research has highlighted significant between-hospital variability in TBI outcomes following emergency surgery, but the overall incidence and epidemiology of TBI remains unclear. To address this need, we established the Global Epidemiology and Outcomes following Traumatic Brain Injury (GEO-TBI) registry, enabling recording of all TBI cases requiring admission irrespective of surgical treatment. Objective: The GEO-TBI: Incidence study aims to describe TBI epidemiology and outcomes according to development indices, and to highlight best practices to facilitate further comparative research. Design: Multi-centre, international, registry-based, prospective cohort study. Subjects: Any unit managing TBI and participating in the GEO-TBI registry will be eligible to join the study. Each unit will select a 90-day study period. All TBI patients meeting the registry inclusion criteria (neurosurgical/ICU admission or neurosurgical operation) during the selected study period will be included in the GEO-TBI: Incidence. Methods: All units will form a study team, that will gain local approval, identify eligible patients and input data. Data will be collected via the secure registry platform and validated after collection. Identifiers may be collected if required for local utility in accordance with the GEO-TBI protocol. Data: Data related to initial presentation, interventions and short-term outcomes will be collected in line with the GEO-TBI core dataset, developed following consensus from an iterative survey and feedback process. Patient demographics, injury details, timing and nature of interventions and post-injury care will be collected alongside associated complications. The primary outcome measures for the study will be the Glasgow Outcome at Discharge Scale (GODS) and 14-day mortality. Secondary outcome measures will be mortality and extended Glasgow Outcome Scale (GOSE) at the most recent follow-up timepoint.

Traumatic brain injury (TBI) is a significant global health problem, which affects 27­69 million people every year. After-effects of TBI commonly affect the injured individuals for years. Most patients who sustain a TBI are from developing countries. Research has shown that there are differences in patients' recovery after TBI between countries and hospitals. The causes of these differences are unclear and tackling them could improve TBI treatment worldwide. To address this need, we have recently established the Global Epidemiology and Outcomes Following Traumatic Brain Injury (GEO-TBI) registry. The international collaborative registry aims to collect data related to the causes, treatments and outcomes related to TBI patients. This data will hopefully enable future research to elucidate the causes of the recovery differences between hospitals, which could lead to improved patient outcomes. The GEO-TBI: Incidence study collects data from all TBI patients that are admitted to participating hospitals or undergo a neurosurgical operation due to TBI during a 90-day period. This study looks at the patient's recovery at discharge using the Glasgow Outcome at Discharge Scale (GODS), and at the 2-week mortality. In addition, the study also evaluates recovery at the most recent follow-up timepoint. We hope that this information will enhance our understanding on the causes, treatments, and commonness of TBI. The study results will also help local hospitals compare their treatment results to an international standard.

Incidence and presentation of vestibular schwannoma: a 3-year cohort registry study.

BACKGROUND: Vestibular schwannoma (VS) is the most common benign tumour arising in the lateral skull base. Reported incidence rates of VS vary across geographical locations and over time. There is scarce updated evidence over the past decade on the epidemiology and mode of presentation of VS. OBJECTIVE: To describe the epidemiology and mode of presentation of VS in the East of England between 2013 and 2016. METHODS: A retrospective epidemiological analysis of data from a national VS registry and electronic patient records was conducted, including all newly diagnosed adult patients in a UK tertiary referral centre, between April 1st, 2013, and March 31st, 2016. RESULTS: There were 391 new cases identified resulting in an overall mean incidence of 2.2 VS cases per 100,000 person-year. The incidence rate for all patients in the <40 age group ranged between 0.3 and 0.7 per 100,000 person-year, increasing to a range of 5.7 to 6.1 per 100,000 person-year in the 60-69 age group. The top three combinations of symptoms on presentation per patient were hearing loss and tinnitus (97, 24.8%), hearing loss alone (79, 20.2%) and hearing loss, tinnitus, and balance symptoms (61, 15.6%). The median duration of symptoms was 12 months, with a wide range from 1.4 to 300 months. Age was negatively correlated with tumour size (r = -0.14 [-0.24 to -0.04], p=0.01) and positively correlated with symptom duration (r = 0.16 [0.03-0.29], p=0.02). CONCLUSIONS: The incidence of vestibular schwannoma has increased compared to previous studies in the UK and is similar to incidence rates reported in other countries during the past decade. It peaks in the seventh decade of life, mainly because of an increase in the diagnosis of small tumours with a long duration of audio-vestibular symptoms in older patients, compared to earlier studies.

Casemix, management, and mortality of patients rreseceiving emergency neurosurgery for traumatic brain injury in the Global Neurotrauma Outcomes Study: a prospective observational cohort study.

BACKGROUND: Traumatic brain injury (TBI) is increasingly recognised as being responsible for a substantial proportion of the global burden of disease. Neurosurgical interventions are an important aspect of care for patients with TBI, but there is little epidemiological data available on this patient population. We aimed to characterise differences in casemix, management, and mortality of patients receiving emergency neurosurgery for TBI across different levels of human development. METHODS: We did a prospective observational cohort study of consecutive patients with TBI undergoing emergency neurosurgery, in a convenience sample of hospitals identified by open invitation, through international and regional scientific societies and meetings, individual contacts, and social media. Patients receiving emergency neurosurgery for TBI in each hospital's 30-day study period were all eligible for inclusion, with the exception of patients undergoing insertion of an intracranial pressure monitor only, ventriculostomy placement only, or a procedure for drainage of a chronic subdural haematoma. The primary outcome was mortality at 14 days postoperatively (or last point of observation if the patient was discharged before this time point). Countries were stratified according to their Human Development Index (HDI)-a composite of life expectancy, education, and income measures-into very high HDI, high HDI, medium HDI, and low HDI tiers. Mixed effects logistic regression was used to examine the effect of HDI on mortality while accounting for and quantifying between-hospital and between-country variation. FINDINGS: Our study included 1635 records from 159 hospitals in 57 countries, collected between Nov 1, 2018, and Jan 31, 2020. 328 (20%) records were from countries in the very high HDI tier, 539 (33%) from countries in the high HDI tier, 614 (38%) from countries in the medium HDI tier, and 154 (9%) from countries in the low HDI tier. The median age was 35 years (IQR 24-51), with the oldest patients in the very high HDI tier (median 54 years, IQR 34-69) and the youngest in the low HDI tier (median 28 years, IQR 20-38). The most common procedures were elevation of a depressed skull fracture in the low HDI tier (69 [45%]), evacuation of a supratentorial extradural haematoma in the medium HDI tier (189 [31%]) and high HDI tier (173 [32%]), and evacuation of a supratentorial acute subdural haematoma in the very high HDI tier (155 [47%]). Median time from injury to surgery was 13 h (IQR 6-32). Overall mortality was 18% (299 of 1635). After adjustment for casemix, the odds of mortality were greater in the medium HDI tier (odds ratio [OR] 2·84, 95% CI 1·55-5·2) and high HDI tier (2·26, 1·23-4·15), but not the low HDI tier (1·66, 0·61-4·46), relative to the very high HDI tier. There was significant between-hospital variation in mortality (median OR 2·04, 95% CI 1·17-2·49). INTERPRETATION: Patients receiving emergency neurosurgery for TBI differed considerably in their admission characteristics and management across human development settings. Level of human development was associated with mortality. Substantial opportunities to improve care globally were identified, including reducing delays to surgery. Between-hospital variation in mortality suggests changes at an institutional level could influence outcome and comparative effectiveness research could identify best practices. FUNDING: National Institute for Health Research Global Health Research Group.

Improvement of the Efficiency and Completeness of Neuro-Oncology Patient Referrals to a Tertiary Center Through the Implementation of an Electronic Referral System: Retrospective Cohort Study.

BACKGROUND: Quality referrals to specialist care are key for prompt, optimal decisions about the management of patients with brain tumors. OBJECTIVE: This study aimed to determine the impact of introducing a Web-based, electronic referral (eReferral) system to a specialized neuro-oncology center, using a service-developed proforma, in terms of waiting times and information completeness. METHODS: We carried out a retrospective cohort study based on the review of medical records of referred adult patients, excluding follow-ups. Primary outcome measures were durations of three key phases within the referral pathway and completion rates of six referral fields. RESULTS: A total of 248 patients were referred to the specialist center during the study period. Median (IQR) diagnostic imaging to referral intervals were 3 (1-5) days with eReferrals, and 9 (4-19), 19 (14-49), and 8 (4-23) days with paper proforma, paper letter, and internal referrals, respectively (P<.001). Median (IQR) referral to multidisciplinary team decision intervals were 3 (2-7), 2 (1-3), 8 (2-24), and 3 (2-6) days respectively (P=.01). For patients having surgery, median (IQR) diagnostic imaging to surgery intervals were 28 (21-41), 34 (27-51), 104 (69-143), and 32 (15-89) days, respectively (P<.001). Proportions of complete fields differed significantly by referral type in all study fields (all with Ps <.001) except for details of presentation, which were present in all referrals. All study fields were always present in eReferrals, as these are compulsory for referral submission. Depending on the data field, level of completeness in the remaining referral types ranged within 69% (65/94) to 87% (82/94), 15% (3/20) to 65% (13/20), and 22% (8/41) to 63% (26/41) in paper proforma, paper letter, and internal referrals, respectively. CONCLUSIONS: An electronic, Web-based, service-developed specific proforma for neuro-oncology referrals performs significantly better, with shorter waiting times and greater completeness of information than other referral types. A wider application of eReferrals is an important first step to streamlining specialist care pathways and providing excellent care. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/10.2196/15002.

Management and outcomes following emergency surgery for traumatic brain injury - A multi-centre, international, prospective cohort study (the Global Neurotrauma Outcomes Study).

INTRODUCTION: Traumatic brain injury (TBI) accounts for a significant amount of death and disability worldwide and the majority of this burden affects individuals in low-and-middle income countries. Despite this, considerable geographical differences have been reported in the care of TBI patients. On this background, we aim to provide a comprehensive international picture of the epidemiological characteristics, management and outcomes of patients undergoing emergency surgery for traumatic brain injury (TBI) worldwide. METHODS AND ANALYSIS: The Global Neurotrauma Outcomes Study (GNOS) is a multi-centre, international, prospective observational cohort study. Any unit performing emergency surgery for TBI worldwide will be eligible to participate. All TBI patients who receive emergency surgery in any given consecutive 30-day period beginning between 1st of November 2018 and 31st of December 2019 in a given participating unit will be included. Data will be collected via a secure online platform in anonymised form. The primary outcome measures for the study will be 14-day mortality (or survival to hospital discharge, whichever comes first). Final day of data collection for the primary outcome measure is February 13th. Secondary outcome measures include return to theatre and surgical site infection. ETHICS AND DISSEMINATION: This project will not affect clinical practice and has been classified as clinical audit following research ethics review. Access to source data will be made available to collaborators through national or international anonymised datasets on request and after review of the scientific validity of the proposed analysis by the central study team.

Quality improvement of neuro-oncology services: integrating the routine collection of patient-reported, health-related quality-of-life measures.

BACKGROUND: Brain cancer has a strong impact on health-related quality of life (HRQoL), and its evaluation in clinical practice can improve the quality of care provided. The aim of this project was to integrate routine collection of HRQoL information from patients with brain tumor or metastasis in 2 specialized United Kingdom tertiary centers, and to evaluate the implementation process. METHODS: Since October 2016, routine collection of electronic self-reported HRQoL information has been progressively embedded in the participating centers using standard questionnaires. During the first year, the project was implemented, and the process evaluated, through regular cycles of process evaluation followed by an action plan, monitoring of questionnaire completion rates, and assessment of patient views. RESULTS: Main challenges encountered included reluctance to change usual practice and limited resources. Key measures for success included strong leadership of senior staff, involvement of stakeholders in project design and evaluation, and continuous strategic support to professionals. Final project workflow included 6 process steps, 1 decision step, and 4 outputs. Questionnaires were mostly self-completed (75.1%), and completion took 6-9 minutes. Most patients agreed that the questionnaire items were easy to understand (97.0%), important for them (93.0%), and helped them think what they wanted to discuss in their clinical consultation (75.4%). CONCLUSIONS: Integrating HRQoL information as a routine part of clinical assessments has the potential to enhance individually tailored patient care in our institutions. Challenges involved in innovations of this nature can be overcome through a systematic approach involving strong leadership, wide stakeholder engagement, and strategic planning.

Defining unmet clinical need across the pathway of brain tumor care: a patient and carer perspective.

OBJECTIVE: The aim of this study was to determine the experience of patients with brain tumors and their carers across distinct parts of their treatment pathway and identify their views on potential service gaps in need of addressing. METHODS: A structured survey was administered at patient workshops across the UK and online through a charity newsletter. Answers to closed questions were analyzed using descriptive statistics, and open questions were examined using techniques of inductive content analysis. RESULTS: A total of 136 survey responses were received, representing patients with a variety of diagnoses and geographical locations (30 counties). There was a wide range of opinions on the provision of current neuro-oncology services. Key themes identified included a perceived lack of information provision, a gap in postdischarge psychological and neuropsychological supports, and an unmet willingness for involvement in research. CONCLUSION: This national survey enhances our knowledge of current patient and carer experience within neuro-oncology services. A number of areas of unmet clinical need are highlighted providing a basis for informing future patient-centered service improvements and research.

Current epidemiology of cerebrospinal fluid shunt surgery in the UK and Ireland (2004-2013).

OBJECTIVES: To determine current epidemiology and clinical characteristics of cerebrospinal fluid (CSF) shunt surgery, including revisions. METHODS: A retrospective, multicentre, registry-based study was conducted based on 10 years' data from the UK Shunt Registry, including primary and revision shunting procedures reported between 2004 and 2013. Incidence rates of primary shunts, descriptive statistics and shunt revision rates were calculated stratified by age group, geographical region and year of operation. RESULTS: 41 036 procedures in 26 545 patients were submitted during the study period, including 3002 infants, 4389 children and 18 668 adults. Procedures included 20 947 (51.0%) primary shunt insertions in 20 947 patients, and 20 089 (49.0%) revision procedures. Incidence rates of primary shunt insertions for infants, children and adults were 39.5, 2.4 and 3.5 shunts per 100 000 person-years, respectively. These varied by geographical subregion and year of operation. The most common underlying diagnoses were perinatal intraventricular haemorrhage (35.3%) and malformations (33.9%) in infants, tumours (40.5%) and malformations (16.3%) in children, and tumours (24.6%), post-haemorrhagic hydrocephalus (16.2%) and idiopathic normal pressure hydrocephalus (14.2%) in adults. Ninety-day revision rates were 21.9%, 18.6% and 12.8% among infants, children and adults, respectively, while first-year revision rates were 31.0%, 25.2% and 17.4%. The main reasons for revision were underdrainage and infection, but overdrainage and mechanical failure continue to pose problems. CONCLUSIONS: Our report informs patients, carers, clinicians, providers and commissioners of healthcare, researchers and industry of the current epidemiology of shunting for CSF disorders, including the potential risks of complications and frequency of revision.

The practice of glycaemic control in intensive care units: A multicentre survey of nursing and medical professionals.

AIMS AND OBJECTIVES: To determine the views of nurses and physicians working in intensive care units (ICU) about the aims of glycaemic control and use of their protocols. BACKGROUND: Evidence about the optimal aims and methods for glycaemic control in ICU is controversial, and current local protocols guiding practice differ between ICUs, both nationally and internationally. The views of professionals on glycaemic control can influence their practice. DESIGN: Cross-sectional, multicentre, survey-based study. METHODS: An online short survey was sent to all physicians and nurses of seven ICUs, including questions on effective glycaemic control, treatment of hypoglycaemia and deviations from protocols' instructions. STROBE reporting guidelines were followed. RESULTS: Over half of the 40 respondents opined that a patient spending <75% admission time within the target glycaemic levels constituted poor glycaemic control. Professionals with more than 5 years of experience were more likely to rate a patient spending 50%-74% admission time within target glycaemic levels as poor than less experienced colleagues. Physicians were more likely to rate a patient spending <50% admission time within target as poor than nurses. There was general agreement on how professionals would rate most deviations from their protocols. Nurses were more likely to rate insulin infusions restarted late and incorrect dosage of rescue glucose as major deviations than physicians. Most professionals agreed on when they would treat hypoglycaemia. CONCLUSIONS: When surveyed on various aspects of glycaemic control, ICU nurses and physicians often agreed, although there were certain areas of disagreement, in which their profession and level of experience seemed to play a role. RELEVANCE TO CLINICAL PRACTICE: Differing views on glycaemic control amongst professionals may affect their practice and, thus, could lead to health inequalities. Clinical leads and the multidisciplinary ICU team should assess and, if necessary, address these differing opinions.

Methodology for the analysis and comparison of protocols for glycaemic control in intensive care.

RATIONALE, AIMS, AND OBJECTIVES: The practice of glycaemic control of critically ill patients admitted to intensive care units (ICUs) is guided by clinical management protocols, designed locally by the ICUs. These protocols differ significantly in their aims and methods. The aim of this study was to develop a standardized methodology for the systematic and objective analysis and comparison of protocols for glycaemic control implemented in any ICU. METHOD: The protocols for glycaemic control implemented in seven ICUs of a UK-based ICU network were analysed using techniques of inductive content analysis, through an open coding process and the framework method. This involved the identification and classification of protocol instructions for glycaemic control, as well as of the processes and decisions pertaining to each of these instructions. These were used to develop a framework for the structured and systematic description and comparison of the protocols' contents, and to develop a technique for the protocols' graphic visualization. RESULTS: The following elements were identified or developed: (1) 35 quantifiable variables and 11 non-quantifiable subjects that could be present in an ICU protocol for glycaemic control, to be used as a framework for the description and comparison of contents; (2) a technique for condensing a protocol into a single, comprehensive flowchart; (3) using these flowcharts, a method for assessing the complexity and comprehensiveness of the protocols. CONCLUSIONS: The methodology developed in this study will allow for any future work analysing the contents of glycaemic control protocols to be carried out in a structured and standardized way. This may be done either as a standalone study, or as the essential first step in any investigation on the impact of new protocols. In turn, the methodology will facilitate the performance of regional, national, and international comparisons, demonstrating the usefulness of this study at a global scale.

Basal functional status predicts functional recovery in critically ill patients with multiple-organ failure.

PURPOSE: We aimed to investigate the effect of baseline demographic, clinical, and functional characteristics of intensive care unit (ICU) patients with multiple-organ failure (MOF) on their functional recovery at 6 and 12 months posthospitalization. MATERIALS AND METHODS: A total of 545 consecutively admitted adult patients with MOF during on admission were included in the study. Patients' functional status was prospectively assessed and compared with the baseline status and at 6 and 12 months postdischarge, using the Modified Rankin Scale and the Glasgow Outcome Scale Extended. Severity of disease on admission was assessed using the Acute Physiology and Chronic Health Evaluation II and the Simplified Acute Physiology Score II. RESULTS: A total of 266 patients were followed up. Functional status among MOF survivors improved between the 6th and 12th month postdischarge from the ICU. Higher functional status before admission, lower severity scores on admission, and younger age positively affected the improvement in functional status after ICU discharge. CONCLUSIONS: The level of functional status befre ICU admission should be considered not only in research studies looking a long-term outcomes from ICU but also in the clinical care planning of critically ill patients during and after their ICU admission.

Bienestar autopercibido y nivel de autonomía de las personas mayores y su relación con el lugar de residencia / Self-perceived wellness and level of autonomy of the elderly and their relationship their place of residence

Objetivo: describir el bienestar autopercibido que tienenlas personas mayores de 65 años cuando viven en sus casasy cuando lo hacen en residencias geriátricas; teniendo encuenta la edad, el sexo, el nivel de autonomía y movilidady el acompañamiento/soledad de las mismos.Material y método: se llevó a cabo un estudio descriptivotransversal sobre 128 ancianos y ancianas (mayores de 65años) residentes en Granada (64 institucionalizados y 64que vivían en sus casas). Tras un cribado del deterioro cognitivo,se administraron el Well Being Index y el Índice deBarthel modificado por Granger et al.Resultados: niveles de bienestar medios e índices de autonomíamedio respectivamente: 18,60 (sobre 25) y 91,73(sobre 100) en hombres institucionalizados; 14,65 y 77,80en mujeres institucionalizadas, 20,56 y 91,39 en hombres sinAtención Domiciliaria (AD), 20,36 y 94,36 en mujeres sinAD, 19,63 y 70,75 en hombres con AD, 15,39 y 69 en mujerescon AD. Los hombres perciben tener un nivel de bienestarelevado con más frecuencia que las mujeres. Aunquela soledad es frecuente en ellas, lo que más les sueleafectar parece ser la edad, el lugar de residencia y el nivelde autonomía. El lugar de vivienda preferido es casi siempreel propio hogar.Conclusiones: en líneas muy generales, se podría decir que,en los individuos de este estudio, los niveles bajos de bienestarpercibido suelen estar directamente relacionados tanto conedades avanzadas como el niveles de autonomía bajo. Loshombres perciben tener un nivel de bienestar elevado conmás frecuencia que las mujeres; y que el lugar de viviendaresulta más beneficioso cuando se trata del propio hogar

Objective: to describe the self-perceived wellness of peopleover 65 years when they live in their homes or when they livein geriatric homes; taking into account their age, sex,level of autonomy and mobility and the presence of familyor carers vs living-alone in these patients.Material and method: a cross-sectional descriptive studywas carried out on 128 elderly individuals of both sexes(over the age of 65) residing in Granada (64 institutionalisedand 64 living at their homes). After screening forcognitive deterioration, the Well Being Index and Barthel’sIndex modified by Granger et al were administered.Results: mean wellness levels and mean autonomy indexeswere respectively: 18,60 (over 25) and 91,73 (over100)in institutionalised men; 14,65 y 77,80 in institutionalisedwomen, 20,56 and 91,39 in men with no Home Care (providedby community nurse), 20,36 and 94,36 in women withoutHome care (provided by community nurse), 19,63 and70,75 in men with Home care (provided by community nurse),15,39 and 69 in women with Home care (provided by communitynurse). Men perceive to have an elevated level ofwellness more frequently than women. Although being aloneand loneliness is more frequent in women, age, the placeof residence and the level of autonomy is what appears toaffect these women the most. The preferred place of residenceis nearly in all cases their own home.Conclusions: in very general lines, it could be said that, inthe individuals of this study, the low levels of self-perceivedwellness are usually directly related both with advanced ageand with low levels of self-autonomy. Men perceive an elevatedlevel of wellness more frequently than women, and their ownhome appears to be the most beneficial place of residence