Global Neurotrauma Surveillance: Are National Databases Overrated? Comment on "Neurotrauma Surveillance in National Registries of Low- and Middle-Income Countries: A Scoping Review and Comparative Analysis of Data Dictionaries".

Injuries are a public health crisis. Neurotrauma, a specific type of injury, is a leading cause of death and disability globally, with the largest burden in low- and middle-income countries (LMICs). However, there is a lack of quality neurotrauma-specific data in LMICs, especially at the national level. Without standard criteria for what constitutes a national registry, and significant challenges frequently preventing this level of data collection, we argue that single-institution or regional databases can provide significant value for context-appropriate solutions. Although granular data for larger populations and a universal minimum dataset to enable comparison remain the gold standard, we must put progress over perfection. It is critical to engage local experts to explore available data and build effective information systems to inform solutions and serve as the foundation for quality and process improvement initiatives. Other items to consider include adequate resource allocation and leveraging of technology as we work to address the persistent but largely preventable injury pandemic.

Delays in emergency department intervention for patients with traumatic brain injury in Uganda.

BACKGROUND: In Sub-Saharan African countries, the incidence of traumatic brain injury (TBI) is estimated to be many folds higher than the global average and outcome is hugely impacted by access to healthcare services and quality of care. We conducted an analysis of the TBI registry data to determine the disparities and delays in treatment for patients presenting at a tertiary care hospital in Uganda and to identify factors predictive of delayed treatment initiation. METHODS: The study was conducted at the Mulago National Referral Hospital, Kampala. The study included all patients presenting to the emergency department (ED) with suspected or documented TBI. Early treatment was defined as first intervention within 4 hours of ED presentation-a cut-off determined using sensitivity analysis to injury severity. Descriptive statistics were generated and Pearson's χ2 test was used to assess the sample distribution between treatment time categories. Univariable and multivariable logistic regression models with <0.05 level of significance were used to derive the associations between patient characteristics and early intervention for TBI. RESULTS: Of 3944 patients, only 4.6% (n=182) received an intervention for TBI management within 1 hour of ED presentation, whereas 17.4% of patients (n=708) received some treatment within 4 hours of presentation. 19% of those with one or more serious injuries and 18% of those with moderate to severe head injury received care within 4 hours of arrival. Factors independently associated with early treatment included young age, severe head injury, and no known pre-existing conditions, whereas older or female patients had significantly less odds of receiving early treatment. DISCUSSION: With the increasing number of patients with TBI, ensuring early and appropriate management must be a priority for Ugandan hospitals. Delay in initiation of treatment may impact survival and functional outcome. Gender-related and age-related disparities in care should receive attention and targeted interventions. LEVEL OF EVIDENCE: Prognostic and epidemiological study; level II evidence.

Long-term follow-up of neurosurgical outcomes for adult patients in Uganda with traumatic brain injury.

OBJECTIVE: Traumatic brain injury (TBI) is a major cause of mortality and morbidity in Uganda and other low- and middle-income countries (LMICs). Due to the difficulty of long-term in-person follow-up, there is a paucity of literature on longitudinal outcomes of TBI in LMICs. Using a scalable phone-centered survey, this study attempted to investigate factors associated with both mortality and quality of life in Ugandan patients with TBI. METHODS: A prospective registry of adult patients with TBI admitted to the neurosurgical ward at Mulago National Referral Hospital was assembled. Long-term follow-up was conducted between 10.4 and 30.5 months after discharge (median 18.6 months). Statistical analyses included univariable and multivariable logistic regression and Cox proportional hazards regression to elucidate factors associated with mortality and long-term recovery. RESULTS: A total of 1274 adult patients with TBI were included, of whom 302 (23.7%) died as inpatients. Patients who died as inpatients received surgery less frequently (p < 0.001), had more severe TBI at presentation (p < 0.001), were older (p < 0.001), and were more likely to be female (p < 0.0001). Patients presenting with TBI resulting from assault were at reduced risk of inpatient death compared with those presenting with TBI caused by road traffic accidents (OR 0.362, 95% CI 0.128-0.933). Inpatient mortality and postdischarge mortality prior to follow-up were 23.7% and 9%, respectively. Of those discharged, 60.8% were reached through phone interviews. Higher Glasgow Coma Scale score at discharge (continuous HR 0.71, 95% CI 0.53-0.94) was associated with improved long-term survival. Tracheostomy (HR 4.38, 95% CI 1.05-16.7) and older age (continuous HR 1.03, 95% CI 1.009-1.05) were associated with poor long-term outcomes. More than 15% of patients continued to suffer from TBI sequelae years after the initial injury, including seizures (6.1%) and depression (10.0%). Despite more than 60% of patients seeking follow-up healthcare visits, mortality was still 9% among discharged patients, suggesting a need for improved longitudinal care to monitor recovery progress. CONCLUSIONS: Inpatient and postdischarge mortality remain high following admission to Uganda's main tertiary hospital with the diagnosis of TBI. Furthermore, posttraumatic sequelae, including seizures and depression, continue to burden patients years after discharge. Effective scalable solutions, including phone interviews, are needed to elucidate and address factors limiting in-hospital capacity and access to follow-up healthcare.

Central Nervous System Tumors in Uganda: Outcomes of Surgical Treatment and Complications Assessed Through Telephone Survey.

BACKGROUND: Uganda has one of the largest unmet neurosurgical needs in the world, but has seen major improvements in neurosurgery-largely centered at Mulago National Referral Hospital (MNRH). This study implements the first long-term follow-up and outcomes analysis of central nervous system tumor patients in Uganda. METHODS: Inpatient data were collected using a prospective database of patients presenting to the MNRH neurosurgical ward between 2014 and 2015. Follow-up health care status was assessed in the patient's language using phone surveys. Analysis was performed to identify which factors were associated with patient outcomes. RESULTS: The MNRH neurosurgical ward saw 112 patients with central nervous system tumors (adult N = 87, female: 70%, median age: 37 years). Meningiomas (21%) comprised the most common tumor diagnosis. In-hospital mortality (18%), 30-day mortality (22%), and 1-year mortality (35%) were high. Thirty percent of patients underwent tumor resection in-patient and had greater median overall survival (66.5 months vs. 5.1 months for nonsurgical patients, P = 0.025). For those with known pathologic diagnoses, patients with glioblastomas had decreased median overall survival (0.83 months vs. 59 months for meningiomas, P = 0.02). Phone interviews yielded an 85% response rate. Of the survivors at the time of follow-up, 55% reported a subjective return to normalcy, and 75% received follow-up care for their tumor with most returning to MNRH. CONCLUSIONS: We show evidence for improved overall survival with surgical care at MNRH. In addition, phone interviews as a method of measuring health outcomes provided an effective means of follow-up, showing that most patients do seek follow-up care.

Causes and outcomes of traumatic brain injuries in Uganda: analysis from a pilot hospital registry.

BACKGROUND: Traumatic brain injury (TBI) is an important cause of morbidity and mortality in low/middle-income countries. The objective was to assess causes and outcomes of unintentional and intentional TBI among patients presenting to a tertiary care hospital in Uganda. METHODS: This study was conducted at Mulago National Referral Hospital, Kampala, Uganda, for 15 months in 2016-2017. Patients of all ages, males and females, presenting to the emergency department with suspected or documented TBI were enrolled. Patient demographics, TBI causes and outcomes were recorded. The outcome of interest was unintentional and intentional TBI. RESULTS: Intent was known for 3749 patients, of these 69.7% were unintentional TBI and 30.3% were intentional TBI. The average age of patients in both groups was similar (28±14 years) with over 70% of patients between 19 and 45 years age group. About 80% were males in both groups. The main causes of unintentional TBI were road traffic injuries (RTI) (88.9%) and falls (11.1%). Pedestrians (42.1%) and motorcycle drivers (28.1%) were the most common road users. Among patients with unintentional TBI, about 43.6% were admitted, 34.0% were sent home. There were 73 deaths: 63 were patients with RTI and 10 had a fall. Although assault (97.1%) was the main cause of intentional TBI, those patients with self-harm were likely to be in severe Glasgow Coma Scale range (39.4%) compared with victims of assault (14.2%). Among patients with intentional TBI, 42.6% were admitted and 37.1% were sent home. There were 30 deaths: 29 were assault victims and 1 of self-harm. DISCUSSION: Unintentional TBI caused by RTI and intentional TBI caused by assault are common among young males attending Mulago Hospital in Kampala. LEVEL OF EVIDENCE: Prospective observational study, level III.

Temporal Delays Along the Neurosurgical Care Continuum for Traumatic Brain Injury Patients at a Tertiary Care Hospital in Kampala, Uganda.

BACKGROUND: Significant care continuum delays between acute traumatic brain injury (TBI) and definitive surgery are associated with poor outcomes. Use of the "3 delays" model to evaluate TBI outcomes in low- and middle-income countries has not been performed. OBJECTIVE: To describe the care continuum, using the 3 delays framework, and its association with TBI patient outcomes in Kampala, Uganda. METHODS: Prospective data were collected for 563 TBI patients presenting to a tertiary hospital in Kampala from 1 June to 30 November 2016. Four time intervals were constructed along 5 time points: injury, hospital arrival, neurosurgical evaluation, computed tomography (CT) results, and definitive surgery. Time interval differences among mild, moderate, and severe TBI and their association with mortality were analyzed. RESULTS: Significant care continuum differences were observed for interval 3 (neurosurgical evaluation to CT result) and 4 (CT result to surgery) between severe TBI patients (7 h for interval 3 and 24 h for interval 4) and mild TBI patients (19 h for interval 3 and 96 h for interval 4). These postarrival delays were associated with mortality for mild (P = .05) and moderate TBI (P = .03) patients. Significant hospital arrival delays for moderate TBI patients were associated with mortality (P = .04). CONCLUSION: Delays for mild and moderate TBI patients were associated with mortality, suggesting that quality improvement interventions could target current triage practices. Future research should aim to understand the contributors to delays along the care continuum, opportunities for more effective resource allocation, and the need to improve prehospital logistical referral systems.

Long-term follow-up of pediatric head trauma patients treated at Mulago National Referral Hospital in Uganda.

In Brief: This study used telephone surveys as a novel method of measuring health outcomes and tracking healthcare utilization in pediatric head trauma patients at the national referral hospital in Uganda. As the first-ever long-term follow-up of this patient population in Uganda, this work establishes a baseline of pediatric head trauma outcomes and lays the groundwork for tracking and improving outcomes for similar patients in low-resource settings.

Neural tube defects in Uganda: follow-up outcomes from a national referral hospital.

OBJECTIVE: Children with neural tube defects (NTDs) require timely surgical intervention coupled with long-term management by multiple highly trained specialty healthcare teams. In resource-limited settings, outcomes are greatly affected by the lack of coordinated care. The purpose of this study was to characterize outcomes of spina bifida patients treated at Mulago National Referral Hospital (MNRH) through follow-up phone surveys. METHODS: All children presenting to MNRH with NTDs between January 1, 2014, and August 31, 2015, were eligible for this study. For those with a documented telephone number, follow-up phone surveys were conducted with the children's caregivers to assess mortality, morbidity, follow-up healthcare, and access to medical resources. RESULTS: Of the 201 patients, the vast majority (n = 185, 92%) were diagnosed with myelomeningocele. The median age at presentation was 6 days, the median length of stay was 20 days, and the median time to surgery was 10 days. Half of the patients had documented surgeries, with 5% receiving multiple procedures (n = 102, 51%): 80 defect closures (40%), 32 ventriculoperitoneal shunts (15%), and 1 endoscopic third ventriculostomy (0.5%). Phone surveys were completed for 53 patients with a median time to follow-up of 1.5 years. There were no statistically significant differences in demographics between the surveyed and nonrespondent groups. The 1-year mortality rate was 34% (n = 18). At the time of survey, 91% of the survivors (n = 30) have received healthcare since their initial discharge from MNRH, with 67% (n = 22) returning to MNRH. Hydrocephalus was diagnosed in 29 patients (88%). Caregivers reported physical deficits in 39% of patients (n = 13), clubfoot in 18% (n = 6), and bowel or bladder incontinence in 12% (n = 4). The surgical complication rate was 2.5%. Glasgow Outcome Scale-Extended pediatric revision scores were correlated with upper good recovery in 58% (n = 19) of patients, lower good recovery in 30% (n = 10), and moderate disability in 12% of patients (n = 4). Only 5 patients (15%) reported access to home health resources postdischarge. CONCLUSIONS: This study is the first to characterize the outcomes of children with NTDs that were treated at Uganda's national referral hospital. There is a great need for improved access to and coordination of care in antenatal, perioperative, and long-term settings to improve morbidity and mortality.

Life After the Neurosurgical Ward in Sub-Saharan Africa: Neurosurgical Treatment and Outpatient Outcomes in Uganda.

BACKGROUND: In the past decade, neurosurgery in Uganda experienced increasing surgical volume and a new residency training program. Although research has examined surgical capacity, minimal data exist on the patient population treated by neurosurgery and their eventual outcomes in sub-Saharan Africa. METHODS: Patients admitted to Mulago National Referral Hospital neurosurgical ward over 2 years (2014 and 2015) were documented in a prospective database. In total, 1167 were discharged with documented phone numbers and thus eligible for follow-up. Phone surveys were developed and conducted in the participant's language to assess mortality, neurologic outcomes, and follow-up health care. RESULTS: During the study period, 2032 patients were admitted to the neurosurgical ward, 80% for traumatic brain injury. A total of 7.8% received surgical intervention. The in-hospital mortality rate was 18%. A total of 870 patients were reached for phone follow-up, a 75% response rate, and 30-day and 1-year mortality were 4% and 8%, respectively. Almost one-half of patients had not had subsequent health care after the initial encounter. Most patients had Glasgow Outcome Scale-Extended scores consistent with good recovery and mild disability, with patients experiencing trauma faring best and patients with tumor faring worst. A total of 85% felt they returned to baseline work performance, and 76% of guardians felt that children returned to baseline school performance. CONCLUSIONS: The neurosurgical service provided health care to a large proportion of nonoperative patients. Phone surveys captured data on patients in whom nearly one-half would be lost to subsequent health care. Although mortality during initial hospitalization was high, more than 90% of those discharged survived at 1-year follow up, and the vast majority returned to work and school.

Determinants of emergency department disposition of patients with traumatic brain injury in Uganda: results from a registry.

BACKGROUND: Traumatic brain injuries (TBIs) are a common cause of emergency department (ED) visits and hospital admissions in Kampala, Uganda. The objective of this study was to assess determinants of ED discharge disposition based on patient demographic and injury characteristics. Four ED outcomes were considered: discharge home, hospital admission, death, and others. METHODS: This prospective study was conducted at Mulago National Referral Hospital, Kampala, Uganda, from May 2016 to July 2017. Patients of all age groups presenting with TBI were included. Patient demographics, external causes of injury, TBI characteristics, and disposition from EDs were noted. Injury severity was estimated using the Glasgow Coma Scale (GCS), Kampala Trauma Score (KTS), and the Revised Trauma Score (RTS). A multinomial logistic regression model was used to estimate conditional ORs of hospital admission, death, and other dispositions compared with the reference category "discharged home". RESULTS: A total of 3944 patients were included in the study with a male versus female ratio of 5.5:1 and a mean age of 28.5 years (SD=14.2). Patients had closed head injuries in 62.9% of cases. The leading causes of TBIs were road traffic crashes (58.8%) and intentional injuries (28.7%). There was no significant difference between the four discharge categories with respect to age, sex, mode of arrival, cause of TBI, place of injury, type of head injury, transport time, and RTS (p>0.05). There were statistically significant differences between the four discharge categories for a number of serious injuries, GCS on arrival, change in GCS, and KTS. In a multinomial logistic regression model, change in GCS, area of residence, number of serious injuries, and KTS were significant predictors of ED disposition. DISCUSSION: This study provides evidence that ED disposition of patients with TBI is differentially affected by injury characteristics and is largely dependent on injury severity and change in GCS during ED stay. LEVEL OF EVIDENCE: Level II.

A prospective neurosurgical registry evaluating the clinical care of traumatic brain injury patients presenting to Mulago National Referral Hospital in Uganda.

BACKGROUND: Traumatic Brain Injury (TBI) is disproportionally concentrated in low- and middle-income countries (LMICs), with the odds of dying from TBI in Uganda more than 4 times higher than in high income countries (HICs). The objectives of this study are to describe the processes of care and determine risk factors predictive of poor outcomes for TBI patients presenting to Mulago National Referral Hospital (MNRH), Kampala, Uganda. METHODS: We used a prospective neurosurgical registry based on Research Electronic Data Capture (REDCap) to systematically collect variables spanning 8 categories. Univariate and multivariate analysis were conducted to determine significant predictors of mortality. RESULTS: 563 TBI patients were enrolled from 1 June- 30 November 2016. 102 patients (18%) received surgery, 29 patients (5.1%) intended for surgery failed to receive it, and 251 patients (45%) received non-operative management. Overall mortality was 9.6%, which ranged from 4.7% for mild and moderate TBI to 55% for severe TBI patients with GCS 3-5. Within each TBI severity category, mortality differed by management pathway. Variables predictive of mortality were TBI severity, more than one intracranial bleed, failure to receive surgery, high dependency unit admission, ventilator support outside of surgery, and hospital arrival delayed by more than 4 hours. CONCLUSIONS: The overall mortality rate of 9.6% in Uganda for TBI is high, and likely underestimates the true TBI mortality. Furthermore, the wide-ranging mortality (3-82%), high ICU fatality, and negative impact of care delays suggest shortcomings with the current triaging practices. Lack of surgical intervention when needed was highly predictive of mortality in TBI patients. Further research into the determinants of surgical interventions, quality of step-up care, and prolonged care delays are needed to better understand the complex interplay of variables that affect patient outcome. These insights guide the development of future interventions and resource allocation to improve patient outcomes.

Past, Present, and Future of Neurosurgery in Uganda.

Neurosurgery in Uganda was virtually non-existent up until late 1960s. This changed when Dr. Jovan Kiryabwire spearheaded development of a neurosurgical unit at Mulago Hospital in Kampala. His work ethic and vision set the stage for rapid expansion of neurosurgical care in Uganda.At the beginning of the 2000s, Uganda was a country of nearly 30 million people, but had only 4 neurosurgeons. Neurosurgery's progress was plagued by challenges faced by many developing countries, such as difficulty retaining specialists, lack of modern hospital resources, and scarce training facilities. To combat these challenges 2 distinct programs were launched: 1 by Dr. Benjamin Warf in collaboration with CURE International, and the other by Dr. Michael Haglund from Duke University. Dr. Warf's program focused on establishing a facility for pediatric neurosurgery. Dr. Haglund's program to increase neurosurgical capacity was founded on a "4 T's Paradigm": Technology, Twinning, Training, and Top-Down. Embedded within this paradigm was the notion that Uganda needed to train its own people to become neurosurgeons, and thus Duke helped establish the country's first neurosurgery residency training program.Efforts from overseas, including the tireless work of Dr. Benjamin Warf, have saved thousands of children's lives. The influx of the Duke Program caused a dynamic shift at Mulago Hospital with dramatic effects, as evidenced by the substantial increase in neurosurgical capacity. The future looks bright for neurosurgery in Uganda and it all traces back to a rural village where 1 man had a vision to help the people of his country.

Estimating the Cost of Neurosurgical Procedures in a Low-Income Setting: An Observational Economic Analysis.

BACKGROUND: There are no data on cost of neurosurgery in low-income and middle-income countries. The objective of this study was to estimate the cost of neurosurgical procedures in a low-resource setting to better inform resource allocation and health sector planning. METHODS: In this observational economic analysis, microcosting was used to estimate the direct and indirect costs of neurosurgical procedures at Mulago National Referral Hospital (Kampala, Uganda). RESULTS: During the study period, October 2014 to September 2015, 1440 charts were reviewed. Of these patients, 434 had surgery, whereas the other 1006 were treated nonsurgically. Thirteen types of procedures were performed at the hospital. The estimated mean cost of a neurosurgical procedure was $542.14 (standard deviation [SD], $253.62). The mean cost of different procedures ranged from $291 (SD, $101) for burr hole evacuations to $1,221 (SD, $473) for excision of brain tumors. For most surgeries, overhead costs represented the largest proportion of the total cost (29%-41%). CONCLUSIONS: This is the first study using primary data to determine the cost of neurosurgery in a low-resource setting. Operating theater capacity is likely the binding constraint on operative volume, and thus, investing in operating theaters should achieve a higher level of efficiency. Findings from this study could be used by stakeholders and policy makers for resource allocation and to perform economic analyses to establish the value of neurosurgery in achieving global health goals.

Pediatric Neurosurgical Outcomes Following a Neurosurgery Health System Intervention at Mulago National Referral Hospital in Uganda.

OBJECTIVE: Pediatric neurosurgical cases have been identified as an important target for impacting health disparities in Uganda, with over 50% of the population being less than 15 years of age. The objective of the present study was to evaluate the effects of the Duke-Mulago collaboration on pediatric neurosurgical outcomes in Mulago National Referral Hospital. METHODS: We performed retrospective analysis of all pediatric neurosurgical cases who presented at Mulago National Referral Hospital in Kampala, Uganda, to examine overall, preprogram (2005-2007), and postprogram (2008-2013) outcomes. We analyzed mortality, presurgical infections, postsurgical infections, length of stay, types of procedures, and significant predictors of mortality. Data on neurosurgical cases was collected from surgical logbooks, patient charts, and Mulago National Referral Hospital's yearly death registry. RESULTS: Of 820 pediatric neurosurgical cases, outcome data were complete for 374 children. Among children who died within 30 days of a surgical procedure, the largest group was less than a year old (45%). Postinitiation of the Duke-Mulago collaboration, we identified an overall increase in procedures, with the greatest increase in cases with complex diagnoses. Although children ages 6-18 years of age were 6.66 times more likely to die than their younger counterparts preprogram, age was no longer a predictive variable postprogram. When comparing pre- and postprogram outcomes, mortality among pediatric patients within 30 days after a neurosurgical procedure increased from 4.3% to 10.0%, mortality after 30 days increased slightly from 4.9% to 5.0%, presurgical infections decreased by 4.6%, and postsurgery infections decreased slightly by 0.7%. CONCLUSIONS: Our data show the provision of more complex neurological procedures does not necessitate improved outcomes. Rather, combining these higher-level procedures with essential pre- and postoperative care and continued efforts in health system strengthening for pediatric neurosurgical care throughout Uganda will help to address and decrease the burden throughout the country.