Silvia D. Vaca, Linda W. Xu, Juliet Nalwanga, Christine Muhumuza, Benjamin J. Lerman, Joel Kiryabwire, Hussein Ssenyonjo, John Mukasa, Michael Muhumuza, Michael Haglund and Gerald Grant
There is a paucity of literature on long-term neurosurgical outcomes in sub-Saharan Africa, and as neurosurgical services expand in each country, it would be beneficial to understand the impact of these services on the national population. Since follow-up can be inconsistent, the authors here used the novel method of telephone surveys to conduct the first-ever long-term follow-up in Uganda to elucidate the outcomes of pediatric head trauma patients treated at the national referral hospital.
A prospectively maintained database of pediatric head trauma patients treated at the Mulago National Referral Hospital (MNRH) between 2014 and 2015 included 232 patients eligible for this study. Quality of life was assessed through phone surveys conducted by a Ugandan collaborator on site who performed all interviews with the guardian listed at the time of hospital admission, using each participant’s language.
Phone interviews were completed for 142 patients, resulting in a 61% response rate. Including inpatient deaths, the mortality rate was 10%. Almost half of the patients (48%) did not return to MNRH postdischarge, and 37% received no subsequent healthcare at all. Including inpatient deaths, the average Extended Glasgow Outcome Scale–Pediatric Revision (GOSE-Peds) scores for patients with severe, moderate, and mild head trauma were 5.68 ± 2.85, 4.79 ± 2.38, and 3.12 ± 2.08, respectively, at 1 year postinjury and 5.56 ± 2.58, 4.00 ± 2.45, and 2.21 ± 1.49, respectively, at 2 years postinjury.
This first-ever long-term follow-up of pediatric head trauma patients in Uganda confirmed the feasibility of a novel phone follow-up method for patients throughout Uganda. The results at 2 years showed poor long-term recovery in patients who suffered moderate or severe head trauma but good recovery in patients who suffered mild head trauma. However, there was greater overall disability than that in comparable head trauma studies in the US. The current study lays the groundwork for phone follow-up in low- and middle-income countries as a viable way to obtain outcome data.
Linda W. Xu, Silvia D. Vaca, Joy Q. He, Juliet Nalwanga, Christine Muhumuza, Joel Kiryabwire, Hussein Ssenyonjo, John Mukasa, Michael Muhumuza and Gerald Grant
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.
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.
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.
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.
Michael C. Jin, Bina Kakusa, Seul Ku, Silvia D. Vaca, Linda W. Xu, Juliet Nalwanga, Joel Kiryabwire, Hussein Ssenyonjo, John Mukasa, Michael Muhumuza, Anthony T. Fuller, Michael M. Haglund and Gerald A. Grant
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.
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.
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.
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.