Creation of a Pilot Surgical Program for the Comprehensive Management of Patients with Congenital Urological Malformations

Abstract

Objectives Congenital malformations constitute the first cause of morbidity and mortality in childhood in Latin America. That is why, since 2001, a surveillance system for congenital malformations has been implemented in Bogota - Colombia. However, despite the increase in detection, an impact on treatment has not been achieved. The present study describes our experience with a novel social program focused on congenital urologic disorders.

Methods The present manuscript is a retrospective observational study. We reviewed two national databases containing patients with congenital malformations. Patients were actively contacted to verify the status of the malformations. Children in whom the malformation was confirmed were offered a free consultation with a multidisciplinary group. After screening for surgical indications, patients were scheduled for surgery.

Results Between November 2018 and December 2019, 60 patients were identified. In total 44, attended the consultation; the remaining did not attend due to financial or travel limitations. The most common condition assessed was hypospadias. In total, 29 patients underwent surgery. The total cost of care was of US$ 5,800.

Conclusions Active search improves attention times and reduces the burden of disease. The limitations to be resolved include optimizing the transportation of patients and their families, which is a frequent limitation to access health care.

Resumen

Objetivos Las malformaciones congénitas corresponden a la principal causa de morbimortalidad en la infancia en América Latina, motivo por el cual desde el 2001 se viene implementando un sistema de vigilancia epidemiológica de malformaciones congénitas en Bogotá, Colombia. Sin embargo, a pesar del aumento en la cobertura del reporte obligatorio, no se ha logrado un impacto sobre su tratamiento. Este estudio busca mostrar nuestra experiencia con un programa integral de pacientes con malformaciones urológicas congénitas.

Métodos El presente es un estudio observacional retrospectivo. Los menores con malformaciones congénitas fueron identificados en dos bases de datos nacionales que incluyen pacientes con malformaciones congénitas. Los pacientes reportados fueron contactados telefónicamente para verificar el estado actual de la malformación. A aquellos niños en quienes se les confirmó la malformación, se les ofreció de manera gratuita una consulta con un grupo multidisciplinario. Una vez confirmadas las indicaciones quirúrgicas, fueron llevados a cirugía.

Resultados Se identificaron 60 pacientes entre noviembre del 2018 y diciembre de 2019. De los pacientes identificados, 44 acudieron a consulta. Los demás no asistieron por limitaciones económicas. La principal condición valorada fue hipospadias. En total, 29 pacientes fueron llevados a cirugía. El costo total de la atención de estos pacientes fue de 22 millones de pesos colombianos.

Conclusiones La búsqueda activa mejora los tiempos de atención y reduce la carga de la enfermedad. Una de las limitaciones aun por resolver es optimizar el transporte de los pacientes y sus familias, que resulta una limitación frecuente para el acceso a la salud.

Keywords

congenital abnormalities - urologic surgical procedures - congenital, hereditary, and neonatal diseases and abnormalities - urogenital abnormalities - urologic diseases - congenital anomalies of the kidney and urinary tract

Palabras clave

anomalías congénitas - procedimientos quirúrgicos urológicos - enfermedades y anomalías neonatales congénitas y hereditarias - anomalías urogenitales - enfermedades urológicas - anomalías congénitas del riñón y del tracto urinario

Ethical Approval and Consent to Participate

Approval was obtained from the Ethics Committee of Hospital Universitario San Ignacio (reference number: FM-cue-8399–15). The procedures used in the present study adhere to the Declaration of Helsinki. The parents/legal guardians of all subjects signed written consents toallow us to use the patients' information for academic and scientific purposes, including medical publications.

Consent for Publication

Not applicable

Author Contributions

All authors contributed to the study's conception and design. The scheduling of surgeries and planning of the doctors' appointments were performed by NF, IZ, JES, JFP, and JCC. Data collection and analysis were performed by NF, JVC, DV, and JGP. NF, JVC, and DV wrote the first draft of the manuscript. All authors read and approved the final manuscript.

Availability of Data and Material

The datasets used and analyzed during the current study are available from the corresponding author upon reasonable request.

Publication History

Received: 20 June 2021

Accepted: 10 February 2022

Article published online:
28 September 2022

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