Access to paediatric cardiac surgery in Colombia: a population-based study.

OBJECTIVES: Globally congenital heart disease mortality is declining, yet the proportion of infant deaths attributable to heart disease rises in Colombia and other middle-sociodemographic countries. We aimed to assess the accessibility of paediatric cardiac surgery (PCS) to children <18 years of age in 2016 in the South American country of Colombia. METHODS: In Bogotá, Colombia, a multi-national team used cross-sectional and retrospective cohort study designs to adapt and evaluate 4 health system indicators at the national level: first, the population with timely geographic access to an institution providing PCS; second, the number of paediatric cardiac surgeons; third, this specialized procedure volume and its national distribution; and fourth, the 30-day perioperative mortality rate after PCS in Colombia. RESULTS: Geospatial mapping approximates 64% (n = 9 894 356) of the under-18 Colombian population lives within 2-h drivetime of an institution providing PCS. Twenty-eight cardiovascular surgeons report performing PCS, 82% (n = 23) with formal training. In 2016, 1281 PCS procedures were registered, 90% of whom were performed in 6 of the country's 32 departments. National non-risk-adjusted all-cause 30-day perioperative mortality rate after PCS was 2.73% (n = 35). CONCLUSIONS: Colombia's paediatric population had variable access to cardiac surgery in 2016, largely dependent upon geography. While the country may have the capacity to provide timely, high-quality care to those who need it, our study enables future comparative analyses to measure the impact of health system interventions facilitating healthcare equity for the underserved populations across Colombia and the Latin American region.

Quality of life in children with infrequent congenital heart defects: cohort study with one-year of follow-up.

BACKGROUND: The evidence regarding patient related outcomes in children with infrequent congenital heart defects (I-CHD) is very limited. We sought to measure quality of life (QoL) in children with I-CHD, and secondarily, to describe QoL changes after one-year of follow-up, self-reported by children and through their caregivers' perspective. METHODS: We assembled a cohort of children diagnosed with an I-CHD in a cardiovascular referral center in Colombia, between August 2016 and September 2018. At baseline and at one-year follow-up, a clinical psychology assessment was performed to establish perception of QoL. The Pediatric Quality of Life Inventory (PedsQL) 4.0 scale was used in both general and cardiac modules for patients and for their caregivers. We used a Mann-Whitney U test to compare scores for general and cardiac modules between patients and caregivers, while a Wilcoxon test was used to compared patients' and caregivers' baseline and follow-up scores. Results are presented as median and interquartile range. RESULTS: To date, QoL evaluation at one-year follow-up has been achieved in 112/157 patients (71%). Self-reported scores in general and cardiac modules were higher than the QoL perceived through their caregivers, both at baseline and after one-year of follow-up. When compared, there was no statistically significant difference in general module scores at baseline between patients (median = 74.4, IQR = 64.1-80.4) and caregivers scores (median = 68.4, IQR = 59.6-83.7), p = 0.296. On the contrary, there was a statistical difference in baseline scores in the cardiac module between patients (median = 79.6, IQR = 69.7-87.4) and caregivers (median = 73.6, IQR = 62.6-84.3), p = 0.019. At one-year of follow-up, scores for the general module between patients (median = 72.8, IQR = 59.2-85.9) and caregivers (median = 69.9, IQR = 58.1-83.7) were not statistically different (p = 0.332). Finally, a significant difference was found for cardiac module scores between patient (median = 75.0, IQR = 67.1-87.1) and caregivers (median = 73.1, IQR = 59.5-83.8), p = 0.034. CONCLUSIONS: QoL in children with I-CHD can be compromised. However, children have a better perception of their QoL when compared with their caregivers' assessments. To provide high-quality care, besides a thorough clinical evaluation, QoL directly elicited by the child should be an essential aspect in the integral management of I-CHD.

Descripción anatómica, clínica y sobrevida de los pacientes con atresia pulmonar que han sido llevados a angioplastia con stent en el ductus arterioso persistente en el periodo 2009-2014 / Anatomical and clinical description and survival of patients with pulmonary atresia subjected to angioplasty with ductal stent in the period 2009-2014

Resumen Objetivo: describir las características anatómicas, la evolución clínica y la sobrevida de los pacientes con atresia pulmonar que han sido llevados a angioplastia con stent en ductus arterioso persistente y determinar si existen diferencias significativas en la saturación al inicio y final del procedimiento y a las 6, 12 y 24 horas posprocedimiento. Materiales y métodos: estudio analítico, descriptivo tipo cohorte. La población de estudio se tomó de las bases de datos del servicio de Cardiología pediátrica de una institución especializada en la ciudad de Bogotá, Colombia. Se incluyeron pacientes con diagnóstico de atresia pulmonar sometidos a angioplastia, en tanto que se excluyeron aquellos con cirugía cardiovascular previa. El análisis estadístico se realizó en STATA® 12,0, mediante estadística descriptiva, curvas de Kaplan-Meier y ANOVA de medidas repetidas. Resultados: se identificaron 237 pacientes con atresia pulmonar. Se seleccionaron 30 de los cuales se excluyeron 5. En total se construyó una cohorte de 25 pacientes que fueron llevados a angioplastia, 52% con atresia pulmonar con comunicación interventricular. Edad promedio 12,2 días, peso 2.698 g, diámetro del DAP 3,8 mm (DE = 1,1), índice de McGoon media 1,35. El implante del stent fue exitoso en todos los pacientes; sin embargo 2 fallecieron en la sala de procedimientos y uno durante las 6 horas siguientes. Las complicaciones más frecuentes fueron paro cardiorrespiratorio (n = 2), trombosis del stent (n = 2) y bacteriemia (n = 2). La mortalidad a 30 días fue del 28% (n = 7); durante el tiempo total fue del 36% (n = 9). Por medio del ANOVA no se encontraron diferencias significativas en los promedios de saturación en los cinco tiempos de interés. Conclusiones: la atresia pulmonar es una patología compleja que requiere intervención invasiva para el mantenimiento de la capacidad circulatoria de los pacientes. Este estudio muestra que a pesar de una intervención efectiva, la mortalidad a los 30 días es elevada. No se encontraron diferencias en los tiempos de saturación, lo que sugiere que mantiene la saturación de los pacientes de una forma no distinta que con la prostaglandina E (PGE1) pero garantiza la permeabilidad del ductus.

Abstract Objective: the aim of this study is to describe the anatomical characteristics, the clinical progression, and survival of patients with pulmonary atresia subjected to angioplasty with a stent in patent ductus arteriosus (PDA), and to determine if there are significant difference in the saturation at the beginning and the end of the procedure, and at 6, 12, and 24 hours after the procedure. Materials and methods: An analytical and descriptive cohort study was conducted on a population taken from the database of a Paediatric Cardiology Department of a specialised institution in the city of Bogota, Colombia. Patients with pulmonary atresia subjected to angioplasty were included, and those with previous cardiovascular were excluded. The statistical analysis was performed using STATA® 12.0, by means of descriptive statistics, Kaplan-Meier curves and repeated measurements ANOVA. Results: A total of 237 patients with pulmonary atresia were identified. Of the 30 that were selected, 5 were excluded, leaving a total of 25 patients that were subjected to angioplasty. Interventricular communication was observed in 52%. The mean age was 12.2 days, with a mean weight of 2.698 g, a mean PDA diameter of 3.8 mm (SD = 1.1), and a mean McGoon index of 1.35. Although the stent implant was successful in all patients, two died in the procedures room, and another one during the following 6 hours. The most common complications were, cardiorespiratory arrest in 2 patients, thrombosis of the stent in 2, and bacteraemia in two patients. The mortality at 30 days was 28% (7), and 36% (9) during the total time. Using ANOVA, no significant differences were found in the saturation means at the five times of interest. Conclusions: Pulmonary atresia is a complicated condition that requires invasive intervention in order to maintain the circulatory capacity of the patients. This study shows that, despite an effective intervention, the 30-day mortality is elevated. No differences were, found in the saturation times, which suggest that saturation is maintained in the patients in a way not unlike that with prostaglandin E (PGE1), but ensures the patency of the ductus.