Mortality from gastrointestinal congenital anomalies at 264 hospitals in 74 low-income, middle-income, and high-income countries: a multicentre, international, prospective cohort study

Summary Background Congenital anomalies are the fifth leading cause of mortality in children younger than 5 years globally. Many gastrointestinal congenital anomalies are fatal without timely access to neonatal surgical care, but few studies have been done on these conditions in low-income and middle-income countries (LMICs). We compared outcomes of the seven most common gastrointestinal congenital anomalies in low-income, middle-income, and high-income countries globally, and identified factors associated with mortality. Methods We did a multicentre, international prospective cohort study of patients younger than 16 years, presenting to hospital for the first time with oesophageal atresia, congenital diaphragmatic hernia, intestinal atresia, gastroschisis, exomphalos, anorectal malformation, and Hirschsprung’s disease. Recruitment was of consecutive patients for a minimum of 1 month between October, 2018, and April, 2019. We collected data on patient demographics, clinical status, interventions, and outcomes using the REDCap platform. Patients were followed up for 30 days after primary intervention, or 30 days after admission if they did not receive an intervention. The primary outcome was all-cause, in-hospital mortality for all conditions combined and each condition individually, stratified by country income status. We did a complete case analysis. Findings We included 3849 patients with 3975 study conditions (560 with oesophageal atresia, 448 with congenital diaphragmatic hernia, 681 with intestinal atresia, 453 with gastroschisis, 325 with exomphalos, 991 with anorectal malformation, and 517 with Hirschsprung’s disease) from 264 hospitals (89 in high-income countries, 166 in middleincome countries, and nine in low-income countries) in 74 countries. Of the 3849 patients, 2231 (58·0%) were male. Median gestational age at birth was 38 weeks (IQR 36–39) and median bodyweight at presentation was 2·8 kg (2·3–3·3). Mortality among all patients was 37 (39·8%) of 93 in low-income countries, 583 (20·4%) of 2860 in middle-income countries, and 50 (5·6%) of 896 in high-income countries (p<0·0001 between all country income groups). Gastroschisis had the greatest difference in mortality between country income strata (nine [90·0%] of ten in lowincome countries, 97 [31·9%] of 304 in middle-income countries, and two [1·4%] of 139 in high-income countries; p≤0·0001 between all country income groups). Factors significantly associated with higher mortality for all patients combined included country income status (low-income vs high-income countries, risk ratio 2·78 [95% CI 1·88–4·11], p<0·0001; middle-income vs high-income countries, 2·11 [1·59–2·79], p<0·0001), sepsis at presentation (1·20 [1·04–1·40], p=0·016), higher American Society of Anesthesiologists (ASA) score at primary intervention (ASA 4–5 vs ASA 1–2, 1·82 [1·40–2·35], p<0·0001; ASA 3 vs ASA 1–2, 1·58, [1·30–1·92], p<0·0001]), surgical safety checklist not used (1·39 [1·02–1·90], p=0·035), and ventilation or parenteral nutrition unavailable when needed (ventilation 1·96, [1·41–2·71], p=0·0001; parenteral nutrition 1·35, [1·05–1·74], p=0·018). Administration of parenteral nutrition (0·61, [0·47–0·79], p=0·0002) and use of a peripherally inserted central catheter (0·65 [0·50–0·86], p=0·0024) or percutaneous central line (0·69 [0·48–1·00], p=0·049) were associated with lower mortality. Interpretation Unacceptable differences in mortality exist for gastrointestinal congenital anomalies between lowincome, middle-income, and high-income countries. Improving access to quality neonatal surgical care in LMICs will be vital to achieve Sustainable Development Goal 3.2 of ending preventable deaths in neonates and children younger than 5 years by 2030

Pediatric Surgical Needs And Barriers In Access To Care In Middle Eastern Refugee Families: A Mixed-Methods Study

Ongoing international conflicts have displaced 80 million people, with over 500,000 resettling in the United States (US). Approximately half (53%) of these are children. Reports from Middle Eastern conflict areas and surveys of refugees arriving in Europe have highlighted increased pediatric surgical burden in refugees. However, surgical conditions and barriers to access in refugee children after resettlement in the US remain largely understudied. This mixed-methods study aimed to quantify the pediatric surgical needs of refugee children resettled in Southern Connecticut, and to explore the factors, facilitators, and barriers that impact Middle Eastern refugee families’ experiences with pediatric surgical care. A two-phase explanatory mixed-methods design featured a quantitative retrospective cohort study within a hospital-network covering Southern Connecticut between 09/01/2009-09/27/2019 of all refugee children younger than 18 years old, followed by a qualitative investigation informed by and designed to explain the trends in the first phase. The quantitative component compared demographics, surgical referrals, incidence of surgical diseases, and pre-operative and post-operative encounters between refugee children and all pediatric patients within the network. The qualitative phase included semi-structured video or phone interviews conducted in English, Pashto, or Arabic with parents of children who underwent surgery, women who sought prenatal surgery consultation, and refugee providers. Interviews were analyzed for core themes and coded using an integrated approach. In the quantitative phase, 1211 refugee children were identified. The need for some operative intervention in refugee children (21.2%) was nearly twice that of children (11.6%) within the network (p\u3c0.0001). Almost half (45.0%) of refugees required postoperative admissions, compared to 32.2% of the general population (p\u3c0.0001). Dental procedures were the most common. Compared to the general population, refugees also carried a higher incidence of circumcision (Incidence Ratio [IR] of 4.73, 95% Confidence Interval [95%CI]: 3.202-6.953, p\u3c0.0001), spinal fusion (IR: 136.4, 95%CI: 58.86-315.6, p\u3c0.0001), inguinal hernia repairs (IR: 2.05, 95%CI: 1.114-3.764, p=0.0350), myringotomy (IR: 7.24, 95%CI: 3.296-15.84, p=0.0002), liver transplants (IR:51.08, 95%CI: 24.81-104.9, p\u3c0.0001), and congenital diaphragmatic hernia repairs (IR:30.86, 95%CI: 8.083-117.5, p=0.0023). Refugee families cancelled 17.7% appointments before and 31.3% within the year after surgery (p\u3c0.0001), and never arrived at 7.2% before and 11.1% within the year after surgery (p\u3c0.0001). The quantitative phase of the study identified four major themes impacting refugee families’ experiences with pediatric surgery: (1) medical navigation and illness experiences, (2) personal support systems, (3) structural determinants of health, and (4) the COVID-19 pandemic. Each theme included multiple barriers and facilitators for refugee families while accessing surgery. Notable subthemes were language and immigration experiences as structural determinants of health; the support of faith, family, friends, and community, balanced with privacy concerns among personal support systems; and communication between the care team and the family as it relates to cultural humility. This work demonstrates that while refugee children were more likely to require operative procedures and post-operative hospital admissions than the general population, they were less likely to comply with suggested post-operative follow-up. As such, our qualitative findings highlight important barriers and facilitators that may lead to these epidemiologic trends and elucidate actionable steps for improving surgical care access for refugee families resettled in the US