Development of a template for operative reporting of pediatric cancer surgery in limited-resource settings by using a modified Delphi method.

PURPOSE: A comprehensive operative report for cancer surgery is crucial for accurate disease staging, risk stratification, and therapy escalation/de-escalation, which affects the outcome. Narrative operative reports may fail to include some critical findings. Furthermore, standardized operative reports can form the basis of a local registry, which is often lacking in limited-resource settings (LRSs). In adult literature, synoptic operative reports (SOR) contain more key findings than narrative operative reports. In the LRSs, where the capacity of diagnostic pathology services is typically suboptimal, the value of a thorough operative report is even greater. The aim of this study was to develop a SOR template to help standardize childhood cancer surgery reporting in LRSs. METHODS: Twenty-three experts in pediatric cancer with extensive experience practicing in LRSs were invited to participate in a modified Delphi procedure. SOR domains for pediatric oncology surgery were drafted based on a literature search and then modified based on experts' opinions. The experts anonymously answered multiple rounds of online questionnaires until all domains and subdomains reached a consensus, which was predefined as 70% agreement. RESULTS: Sixteen experts participated in the study, and two rounds of the survey were completed. Twenty-one domains were considered relevant, including demographics, diagnosis, primary site, preoperative disease stage, previous tumor biopsy or surgery, preoperative tumor rupture, neoadjuvant therapy, surgical access, type of resection, completeness of resection, tumor margin assessment, locoregional tumor extension, organ resection, intraoperative tumor spillage, vascular involvement, lymph node sampling, estimated blood loss, intraoperative complications and interventions to address them, specimen names, and specimen orientation. CONCLUSION: We developed a SOR template for pediatric oncology surgery in LRSs. Consensus for all 21 domains and associated subdomains was achieved using a modified Delphi procedure.

Met and Unmet Need for Pediatric Surgical Access in Uganda: A Country-Wide Prospective Analysis.

INTRODUCTION: Children's surgical access in low and low-middle income countries is severely limited. Investigations detailing met and unmet surgical access are necessary to inform appropriate resource allocation. MATERIALS AND METHODS: Surgical volume, outcomes, and distribution of pediatric general surgical procedures were analyzed using prospective pediatric surgical databases from four separate regional hospitals in Uganda. The current averted burden of surgical disease through pediatric surgical delivery in Uganda and the unmet surgical need based on estimates from high-income country data was calculated. RESULTS: A total of 8514 patients were treated at the four hospitals over a 6-year period corresponding to 1350 pediatric surgical cases per year in Uganda or six surgical cases per 100,000 children per year. The majority of complex congenital anomalies and surgical oncology cases were performed at Mulago and Mbarara Hospitals, which have dedicated pediatric surgical teams (P < 0.0001). The averted burden of pediatric surgical disease was 27,000 disability adjusted life years per year, which resulted in an economic benefit of approximately 23 million USD per year. However, the average case volume performed at the four regional hospitals currently represents 1% of the total projected pediatric surgical need. CONCLUSIONS: This investigation is one of the first to demonstrate the distribution of pediatric surgical procedures at a country level through the use of a prospective locally created database. Significant disease burden was averted by local pediatric and adult surgical teams, demonstrating the economic benefit of pediatric surgical care delivery. These findings support several ongoing strategies to increase pediatric surgical access in Uganda.

Improving Surgical Research Capacity in Low- and Middle-Income Countries: Can Episodic Data Collection Reliably Estimate Perioperative Mortality?

OBJECTIVE: The aim of this study was to empirically determine the optimal sample size needed to reliably estimate perioperative mortality (POMR) in different contexts. SUMMARY BACKGROUND DATA: POMR is a key metric for measuring the quality and safety of surgical systems and will need to be tracked as surgical care is scaled up globally. Continuous collection of outcomes for all surgical cases is not the standard in high-income countries and may not be necessary in low- and middle-income countries. METHODS: We created simulated datasets to determine the sampling frame needed to reach a given precision. We validated our findings using data collected at Mulago National Referral Hospital in Kampala, Uganda. We used these data to create a tool that can be used to determine the optimal sampling frame for a population based on POMR rate and target POMR improvement goal. RESULTS: Precision improved as the sampling frame increased. However, as POMR increased, lower sampling percentages were needed to achieve a given precision. A total of 357 eligible cases were identified in the Mulago database with an overall POMR rate of 14%. Precision of ±10% was achieved with 34% sampling, and precision of ±25% was obtained at 9% sampling. Using simulated datasets, a tool was created to determine the minimum sample percentage needed to detect a given mortality improvement goal. CONCLUSIONS: Reliably tracking POMR does not require continuous data collection. Data driven sampling strategies can be used to decrease the burden of data collection to track POMR in resource-constrained settings.

Evidence-based surgical guidelines for treating children with Wilms tumor in low-resource settings.

BACKGROUND: Survival of Wilms tumor (WT) is > 90% in high-resource settings but < 30% in low-resource settings. Adapting a standardized surgical approach to WT is challenging in low-resource settings, but a local control strategy is crucial to improving outcomes. OBJECTIVE: Provide resource-sensitive recommendations for the surgical management of WT. METHODS: We performed a systematic review of PubMed and EMBASE through July 7, 2020, and used the GRADE approach to assess evidence and recommendations. RECOMMENDATIONS: Initiation of treatment should be expedited, and surgery should be done in a high-volume setting. Cross-sectional imaging should be done to optimize preoperative planning. For patients with typical clinical features of WT, biopsy should not be done before chemotherapy, and neoadjuvant chemotherapy should precede surgical resection. Also, resection should include a large transperitoneal laparotomy, adequate lymph node sampling, and documentation of staging findings. For WT with tumor thrombus in the inferior vena cava, neoadjuvant chemotherapy should be given before en bloc resection of the tumor and thrombus and evaluation for viable tumor thrombus. For those with bilateral WT, neoadjuvant chemotherapy should be given for 6-12 weeks. Neither routine use of complex hilar control techniques during nephron-sparing surgery nor nephron-sparing resection for unilateral WT with a normal contralateral kidney is recommended. When indicated, postoperative radiotherapy should be administered within 14 days of surgery. Post-chemotherapy pulmonary oligometastasis should be resected when feasible, if local protocols allow omission of whole-lung irradiation in patients with nonanaplastic histology stage IV WT with pulmonary metastasis without evidence of extrapulmonary metastasis. CONCLUSION: We provide evidence-based recommendations for the surgical management of WT, considering the benefits/risks associated with limited-resource settings.

Pediatric surgical quality improvement in low- and middle-income countries: What data to collect?

BACKGROUND: As surgical access expands in low- and middle-income countries, risk-adjusted outcomes data are needed to measure and improve surgical quality. Existing data collection tools in high-income countries are complex and may be burdensome to implement in low and middle income countries. This study determined the minimum dataset needed for adequate risk adjustment to predict perioperative mortality using data collected in a low- and middle-income countries. METHODS: All patients admitted to the pediatric surgery ward at Mulago National Referral Hospital in Kampala, Uganda, from January 1, 2014 through December 31, 2018 were included. Studies were performed modelling the effects of reducing data granularity and reducing number of variables on the area under the receiver operating curve. RESULTS: Of the 3,194 patients included, 1,941(61%) were male, 957(30%) were neonates, 1,714 (54%) had an operation, and the overall mortality rate was 14%. Granularity reduction analyses found that measuring age in ranges was equivalent to recording age in days (area under the receiver operating curve = 0.776; 95% confidence interval, 0.754%-0.798%, vs 0.815, 95% confidence interval, 0.794%-0.837%). Variable reduction analyses found that models with 3 predictor variables (diagnosis, procedure, and district) reached a maximum area under the receiver operating curve of 0.915 (95% confidence interval, 0.903%-0.928%), which was equivalent to the model using all available predictor variables (area under the receiver operating curve = 0.932; 95% confidence interval, 0.922%-0.943%). For all 3-variable models, the primary diagnosis contributed most to predictive ability (P < .001). CONCLUSION: Effective risk adjustment for perioperative mortality can be performed in low and middle income countries using minimal, objective variables often already part of the patient's medical record. This approach can be used by clinicians, hospital administrators, and policymakers low- and middle-income countries looking to begin data collection to track and improve patient outcomes.

Training low-middle-income (LMIC) pediatric surgeons in a high-income country (HIC) program.

BACKGROUND: A popular paradigm to support surgical education for low- and middle-income countries (LMICs) is partnering with high-income country (HIC) surgeons. These relationships may, however, be asymmetric and fail to optimally address the most pressing curricular needs. We explored the effectiveness of our LMIC-HIC educational partnership. METHODS: Through a partnership between a HIC (Canada) and a LMIC (Uganda), three candidate surgeons were commissioned for a custom designed 1-year training experience at our HIC accredited pediatric surgical training centre as part of their overall formal education. The training curriculum was developed in collaboration with the LMIC pediatric surgeon and utilized competency-based medical education principles. A Likert and short-answer survey tool was administered to these trainees upon completion of their training. RESULTS: All prescribed milestones as well as specialty certification by examination of the College of Surgeons of East, Central and Southern Africa was achieved by participating fellows, each of whom have begun clinical practice, leadership and teaching roles in their home country. Although several obstacles were identified by fellows, all agreed that the experience boosted their clinical and teaching abilities, and was worth the effort. CONCLUSION: This endeavour in global pediatric surgical training represents a significant innovation in surgical education partnerships and would be reproducible across different surgical subspecialties and contexts. Such collaborative efforts represent a feasible upskilling opportunity towards addressing global surgical service capacity. LEVEL OF EVIDENCE: V.

Best Buy in Public Health or Luxury Expense?: The Cost-effectiveness of a Pediatric Operating Room in Uganda From the Societal Perspective.

OBJECTIVE: To determine the cost-effectiveness of building and maintaining a dedicated pediatric operating room (OR) in Uganda from the societal perspective. BACKGROUND: Despite the heavy burden of pediatric surgical disease in low-income countries, definitive treatment is limited as surgical infrastructure is inadequate to meet the need, leading to preventable morbidity and mortality in children. METHODS: In this economic model, we used a decision tree template to compare the intervention of a dedicated pediatric OR in Uganda for a year versus the absence of a pediatric OR. Costs were included from the government, charity, and patient perspectives. OR and ward case-log informed epidemiological and patient outcomes data, and measured cost per disability adjusted life year averted and cost per life saved. The incremental cost-effectiveness ratio (ICER) was calculated between the intervention and counterfactual scenario. Costs are reported in 2015 US$ and inflated by 5.5%. FINDINGS: In Uganda, the implementation of a dedicated pediatric OR has an ICER of $37.25 per disability adjusted life year averted or $3321 per life saved, compared with no existing operating room. The ICER is well below multiple cost-effectiveness thresholds including one times the country's gross domestic product per capita ($694). The ICER remained robust under 1-way and probabilistic sensitivity analyses. CONCLUSION: Our model ICER suggests that the construction and maintenance of a dedicated pediatric operating room in sub-Saharan Africa is very-cost effective if hospital space and personnel pre-exist to staff the facility. This supports infrastructure implementation for surgery in sub-Saharan Africa as a worthwhile investment.

Burden of emergency pediatric surgical procedures on surgical capacity in Uganda: a new metric for health system performance.

BACKGROUND: The significant burden of emergency operations in low- and middle-income countries can overwhelm surgical capacity leading to a backlog of elective surgical cases. The purpose of this investigation was to determine the burden of emergency procedures on pediatric surgical capacity in Uganda and to determine health metrics that capture surgical backlog and effective coverage of children's surgical disease in low- and middle-income countries. METHODS: We reviewed 2 independent and prospectively collected databases on pediatric surgical admissions at Mulago National Referral Hospital and Mbarara Regional Referral Hospital in Uganda. Pediatric surgical patients admitted at either hospital between October 2015 to June 2017 were included. Our primary outcome was the distribution of surgical acuity and associated mortality. RESULTS: A combined total of 1,930 patients were treated at the two hospitals, and 1,110 surgical procedures were performed. There were 571 emergency cases (51.6%), 108 urgent cases (9.7%), and 429 elective cases (38.6%). Overall mortality correlated with surgical acuity. Emergency intestinal diversions for colorectal congenital malformations (anorectal malformations and Hirschsprung's disease) to elective definitive repair was 3:1. Additionally, 30% of inguinal hernias were incarcerated or strangulated at time of repair. CONCLUSION: Emergency and urgent operations utilize the majority of operative resources for pediatric surgery groups in low- and middle-income countries, leading to a backlog of complex congenital procedures. We propose the ratio of emergency diversion to elective repair of colorectal congenital malformations and the ratio of emergency to elective repair of inguinal hernias as effective health metrics to track this backlog. Surgical capacity for pediatric conditions should be increased in Uganda to prevent a backlog of elective cases.

Long term bowel function after repair of anorectal malformations in Uganda.

BACKGROUND: Anorectal malformations (ARMs) are common congenital anomalies cared for at Mulago Pediatric Surgery Unit (PSU), similar to other sites in the region. All patients undergo staged repairs and complete treatment at older ages compared to high-income countries (HICs). This is the first study to examine long-term bowel function in our patients and compare with HICs. METHODS: A retrospective cohort study was conducted of all children 3-12 years old with ARMs who had repair between January 2012 and June 2017 and who completed surgical repair at least 6 months prior to the study. Bowel function was measured using the fecal continence scoring system derived from Rintala and Lindahl (1995). As in prior studies, patients were classified by score into four categories: Poor (6-9); Fair (9-11); Good (12-17); and Normal (18-20). RESULTS: Median follow up was 2 years post stoma closure. Long-term bowel function was Normal/Good in 65% (C.I 27, 45), and Fair/Poor 35% (C.I 55, 73), with soiling in 49% (C.I 40, 59), constipation in 23% (C.I 16, 32); and incontinence in 39% (C.I 30, 39). There was no statistically significant association between bowel function and multiple demographic, social, and clinical factors. Median age at completion of treatment (stoma reversal) was 2.3 years old, and median duration of colostomy (interval between stoma placement and takedown) was 1.8 years. CONCLUSION: Despite definitive repair at older age and almost two years of living with a stoma, our patients achieve fair long-term bowel function. Nonetheless, improved follow up and timely management of complications may improve outcomes soiling, incontinence and constipation. LEVEL OF EVIDENCE: Level II.

Burden of Surgical Infections in a Tertiary-Care Pediatric Surgery Service in Uganda.

Background: Delayed presentation of surgical disease often leads to infection in low- and middle-income countries (LMICs). In addition, many primary infections require surgical intervention. The burden of infection in children's surgery in LMICs is poorly defined and may tax the limited availability of surgical resources. Methods: A prospective surgical database was reviewed for all children presenting to a Ugandan tertiary referral hospital from January 2012 to August 2016. All patients presenting with infection were included and analyzed by operative intervention and survival. Results: Of the 3,494 children admitted over the time period, 712 (20.4%) presented with infection. A total of 455 patients (64%) with an infection underwent an operation, with an in-hospital mortality rate of 12.5%. Operations involving infections represented 20% of the volume of the children's surgery department. Common conditions were abscesses (n = 308; 43.4%), typhoid intestinal perforations (n = 85; 12.0%), appendicitis (n = 78; 11.0%) and perforated bowel caused by ileocolic intussusception (n = 37; 5.2%). Patients with esophageal atresia presenting with aspiration pneumonia had an in-hospital mortality rate of 78.6%, those with abdominal sepsis a 67% mortality rate, and neonatal infants with necrotizing enterocolitis a 50% mortality rate. Conclusion: There is a high volume of infection in children requiring surgery, contributing to a high mortality rate. Resource allocation for children's surgical care in LMIC should be directed toward timely diagnosis and surgical intervention of these conditions.

Design, implementation and long-term follow-up of a context specific trauma training course in Uganda: Lessons learned and future directions.

BACKGROUND: The Kampala Advanced Trauma Course (KATC) was developed in 2007 due to a locally identified need for an advanced trauma training curriculum for the resource-constrained setting. We describe the design, implementation and evaluation of the course. METHODS: The course has been delivered to over 1,000 interns rotating through surgery at Mulago National Referral Hospital. Participants from 2013 to 2016 were surveyed after completion of the course. RESULTS: The KATC was developed with local faculty and includes didactic and simulation modules. Over 50% of survey respondents reported feeling confident performing and teaching 7 of 11 course skills and felt the most relevant skill was airway management(30.2%). Participants felt least confident managing head trauma(26.4%). Lack of equipment(52.8%) was identified as the most common barrier to providing trauma care. CONCLUSIONS: Providers are confident with most skill sets after taking the KATC. Minimal dependence on instructors from high-income countries has kept the course sustainable and maximized local relevance.

Correction to: Epidemiology and mortality of pediatric surgical conditions: insights from a tertiary center in Uganda.

In the original publication, the family name of one of the authors was spelt incorrectly. The correct name should read as Nensi Ruzgar.

Epidemiology and mortality of pediatric surgical conditions: insights from a tertiary center in Uganda.

INTRODUCTION/PURPOSE: The burden of pediatric surgical disease is largely unknown in low- and middle-income countries such as Uganda where access to care is limited. METHODS: Implementation of a locally led database in January 2012 at a Ugandan tertiary referral hospital, and review of 3465 prospectively collected pediatric surgical admissions from January 2012 to August 2016. RESULTS: 2090 children (60.3%) underwent surgery during admission. 59% were male and 41% female. 28.6% of admissions were in neonates and 50.4% were in children less than 1 year old. Congenital anomalies including Hirschsprung's, anorectal malformations, intestinal atresias, omphalocele, and gastroschisis were the most common diagnoses (38.6%) followed by infections (15.0%) and tumors (8.6%). Mortality rates were substantially higher than those of high-income countries; for example, gastroschisis and intussusception had mortality rates of 90.1% and 19.7%, respectively. Post-operative mortality was highest in the congenital anomalies group (15.0%). CONCLUSION: There is a high burden of infant congenital anomalies with higher mortality rates compared to high-income countries. The unit performs primarily specialized procedures appropriate for a tertiary center. We hope that these data will facilitate evaluation of ongoing quality improvement and capacity-building initiatives.

Barriers to Pediatric Surgical Care in Low-Income Countries: The Three Delays' Impact in Uganda.

BACKGROUND: We sought to understand the challenges in accessing pediatric surgical care in the context of the "three delays" model at the Pediatric Surgery Outpatient Clinic (PSOPC) at a tertiary hospital in Kampala, Uganda. MATERIALS AND METHODS: An outpatient database was established at the weekly PSOPC. A survey regarding prior healthcare visits and barriers to care was additionally administered to clinic patients and inpatients. RESULTS: Patients first sought healthcare a median of 56 d before the current visit to the PSOPC. A majority (52%) of patients first sought care at another health facility, and 17% of those surveyed had presented to the PSOPC three or more times for their current medical issue. Of 240 patients with a new issue or due for their next surgery, 10% were admitted to the ward, with only 54% receiving definitive care. Included in the most commonly needed surgeries for PSOPC patients were herniotomy (16% inguinal; 14.9% umbilical), orchiopexy (6.3%), posterior sagittal anorectoplasty (6.3%), and colostomy closure (4.4%), with the range of patient ages at the time of presentation reflecting delays in care. Patient expenditures associated with travel to the hospital showed inpatients coming from significantly further away, with higher costs of travel and need to borrow or sell assets to cover travel costs, when compared with PSOPC patients. CONCLUSIONS: Patients face significant delays in accessing and receiving definitive surgical care. Associated burdens associated with these delays place patients at risk for catastrophic health expenditures. Infrastructure and capacity development are necessary for improvement in pediatric surgical care.

Unifying Children's Surgery and Anesthesia Stakeholders Across Institutions and Clinical Disciplines: Challenges and Solutions from Uganda.

BACKGROUND: There is a significant unmet need for children's surgical care in low- and middle-income countries (LMICs). Multidisciplinary collaboration is required to advance the surgical and anesthesia care of children's surgical conditions such as congenital conditions, cancer and injuries. Nonetheless, there are limited examples of this process from LMICs. We describe the development and 3-year outcomes following a 2015 stakeholders' meeting in Uganda to catalyze multidisciplinary and multi-institutional collaboration. METHODS: The stakeholders' meeting was a daylong conference held in Kampala with local, regional and international collaborators in attendance. Multiple clinical specialties including surgical subspecialists, pediatric anesthesia, perioperative nursing, pediatric oncology and neonatology were represented. Key thematic areas including infrastructure, training and workforce retention, service delivery, and research and advocacy were addressed, and short-term objectives were agreed upon. We reported the 3-year outcomes following the meeting by thematic area. RESULTS: The Pediatric Surgical Foundation was developed following the meeting to formalize coordination between institutions. Through international collaborations, operating room capacity has increased. A pediatric general surgery fellowship has expanded at Mulago and Mbarara hospitals supplemented by an international fellowship in multiple disciplines. Coordinated outreach camps have continued to assist with training and service delivery in rural regional hospitals. CONCLUSION: Collaborations between disciplines, both within LMICs and with international partners, are required to advance children's surgery. The unification of stakeholders across clinical disciplines and institutional partnerships can facilitate increased children's surgical capacity. Such a process may prove useful in other LMICs with a wide range of children's surgery stakeholders.

From Procedure to Poverty: Out-of-Pocket and Catastrophic Expenditure for Pediatric Surgery in Uganda.

BACKGROUND: Financial protection from catastrophic health care expenditure (CHE) and patient out-of-pocket (OOP) spending are key indicators for sustainable surgical delivery. We aimed to calculate these metrics for a hospital stay requiring surgery in Uganda's pediatric population. METHODS: A survey was administered to family members of postoperative patients in the pediatric surgical ward at Mulago Hospital. Cost categories included direct medical costs, direct nonmedical costs, indirect costs, plus money borrowed and items sold to pay for the hospital stay. CHE was defined as spending greater than 10% of annual household expenditure. Costs were reported in Ugandan shillings and US dollars. RESULTS: One hundred and thirty-two patient families were surveyed between November 2016 and April 2017. Median direct costs were $27.55 (IQR 18.73-183.69) for diagnostics, $18.36 (IQR 9.52-41.33) for medications, $26.63 (IQR 9.19-45.92) for transportation, and $32.60 (IQR 12.85-64.29) for food and lodging. Forty-four percent of respondents were employed, and median indirect cost from productivity loss was $95.52 (IQR 55.10-243.38). Eighteen percent (16/87) borrowed money, and 9% (8/87) sold possessions to pay for the hospital stay. Total median OOP cost for patient families per hospital stay was $150.62 (IQR 65.21-339.82). Sixteen percent (21/132) of families incurred CHE from direct costs, and the proportion rose to 27% (32/132) when indirect cost was included. CONCLUSIONS: Although pediatric surgical services in Uganda are formally provided for free by the public sector, families accrue substantial OOP expenditure and almost a third of households incur CHE for a pediatric surgical procedure. This study suggests that broader financial protection must be established to meet Sustainable Development Goal targets.

A Cost-Effectiveness Analysis of a Pediatric Operating Room in Uganda.

This study examines the cost-effectiveness of constructing a dedicated pediatric operating room (OR) in Uganda, a country where access to surgical care is limited to 4 pediatric surgeons serving a population of over 20 million children under 15 years of age. METHODS: A simulation model using a decision tree template was developed to project the cost and disability-adjusted life-years saved by a pediatric OR in a low-income setting. Parameters are informed by patient outcomes of the surgical procedures performed. Costs of the OR equipment and a literature review were used to calculate the incremental cost-effectiveness ratio of a pediatric OR. One-way and probabilistic sensitivity analysis were performed to assess parameter uncertainty. Economic monetary benefit was calculated using the value of a statistical life approach. RESULTS: A pediatric OR averted a total of 6,447 disability-adjusted life-years /year (95% uncertainty interval 6,288-6,606) and cost $41,182/year (UI 40,539-41,825) in terms of OR installation. The pediatric operating room had an incremental cost-effectiveness ratio of $6.39 per disability-adjusted life-year averted (95% uncertainty interval of 6.19-6.59), or $397.95 (95% uncertainty interval of 385.41-410.67) per life saved based on the country's average life expectancy in 2015. These values were well within the WHO guidelines of cost-effectiveness threshold. The net economic benefit amounted to $5,336,920 for a year of operation, or $16,371 per patient. The model remained robust with one-way and probabilistic sensitivity analyses. CONCLUSION: The construction of a pediatric operating room in Uganda is a cost-effective and worthwhile investment, endorsing future decisions to enhance pediatric surgical capacity in the resource-limited settings of Sub-Saharan Africa.

The socioeconomic impact of a pediatric ostomy in Uganda: a pilot study.

INTRODUCTION: Multiple pediatric surgical conditions require ostomies in low-middle-income countries. Delayed presentations increase the numbers of ostomies. Patients may live with an ostomy for a prolonged time due to the high backlog of cases with insufficient surgical capacity. In caring for these patients in Uganda, we frequently witnessed substantial socioeconomic impact of their surgical conditions. METHODS: The operative log at the only pediatric surgery referral center in Uganda was reviewed to assess the numbers of children receiving ostomies over a 3-year period. Charts for patients with anorectal malformations (ARM) and Hirschsprung's disease (HD) were reviewed to assess delays in accessing care. Focus group discussions (FGD) were held with family members of children with ostomies based on themes from discussions with the surgical and nursing teams. A pilot survey was developed based on these themes and administered to a sample of patients in the outpatient clinic. RESULTS: During the period of January 2012-December 2014, there was one specialty-certified pediatric surgeon in the country. There were 493 ostomies placed for ARM (n = 234), HD (N = 114), gangrenous ileocolic intussusception (n = 95) and typhoid-induced intestinal perforation (n = 50). Primary themes covered in the FGD were: stoma care, impact on caregiver income, community integration of the child, impact on family unit, and resources to assist families. Many patients with HD and ARM did not present for colostomy until after 1 year of life. None had access to formal ostomy bags. 15 caregivers completed the survey. 13 (86%) were mothers and 2 (13%) were fathers. Almost half of the caregivers (n = 7, 47%) stated that their spouse had left the family. 14 (93%) caregivers had to leave jobs to care for the stoma. 14 respondents (93%) reported that receiving advice from other caregivers was beneficial. CONCLUSION: The burden of pediatric surgical disease in sub-Saharan Africa is substantial with significant disparities compared to high-income countries. Significant socioeconomic complexity surrounds these conditions. While some solutions are being implemented, we are seeking resources to implement others. This data will inform the design of a more expansive survey of this patient population to better measure the socioeconomic impact of pediatric ostomies and guide more comprehensive advocacy and program development.

Disparity in access and outcomes for emergency neonatal surgery: intestinal atresia in Kampala, Uganda.

BACKGROUND/AIM: Intestinal atresia is one of the leading causes of neonatal intestinal obstruction (NIO). The purpose of this study was to analyze the presentation and outcome of IA and compare with those from both similar and high-income country settings. PATIENTS AND METHODS: A retrospective review of prospectively collected data from patient charts and pediatric surgical database for 2012-2015 was performed. Epidemiological data and patient characteristics were analyzed and outcomes were compared with those reported in other LMICs and high-income countries (HICs). Unmet need was calculated along with economic valuation or economic burden of surgical disease. RESULTS: Of 98 patients, 42.9% were male. 35 patients had duodenal atresia (DA), 60 had jejunio-ileal atresia (JIA), and 3 had colonic atresia. The mean age at presentation was 7.14 days for DA and 6.7 days for JIA. Average weight for DA and JIA was 2.2 and 2.12 kg, respectively. All patients with DA and colonic atresia underwent surgery, and 88.3% of patients with JIA had surgery. Overall mortality was 43% with the majority of deaths attributable to aspiration, anastomotic leak, and sepsis. 3304 DALYs were calculated as met compared to 25,577 DALYs' unmet. CONCLUSION: Patients with IA in Uganda present late in the clinical course with high morbidity and mortality attributable to a combination of late presentation, poor nutrition status, surgical complications, and likely underreporting of associated anomalies rather than surgical morbidity alone. LEVEL OF EVIDENCE: Level IV, Case series with no comparison group.

Not gastroschisis or omphalocele or anything in between: a novel congenital abdominal wall defect.

Congenital abdominal wall defects occur when normal embryonic development is interrupted and most commonly results in gastroschisis or omphalocele. Other entities, such as ruptured omphalocele, vanishing gastroschisis, and patent omphalomesenteric ducts with prolapse, have also been described and can create a confusing picture. This case of a newborn with a midline abdominal defect and a mass that was intestine-like and arose from the bowel cannot be classified, and no similar reports were found. This suggests a previously undescribed abdominal wall defect with an aberrant colonic appendage.