Creation of a professional network to improve spina bifida care: Argentina case

Issue title: Spina Bifida

Guest editors: Timothy Brei and Amy Houtrow

Article type: Research Article

Authors: Lyons, Gastón Valverde^{a; *} | Burek, Carol^b | Campmani, Liliana^b | De Castro, Fernanda^b | López, Beatriz^b | Sager, Cristian^b

Affiliations: [a] Maternal and Child Health Department, Hospital Universitario Austral, Pilar, Buenos Aires, Argentina | [b] SB Clinic at Hospital “Prof. Dr. Juan P. Garrahan”, Combate de los Pozos 1881, C1245AAM CABA, Buenos Aires, Argentina

Correspondence: [*] Corresponding author: Gastón Valverde Lyons, Hospital Universitario Austral, Av. Juan Domingo Perón 1500, B1629AHJ Pilar, Buenos Aires, Argentina. Tel.: +54 0230 448 2000/+54 911 5119 3000; E-mail: [email protected].

Abstract: The purpose of this paper is to render an account of the experience of a group of healthcare providers and to propose innovative solutions for patients with Spina Bifida (SB) in Argentina. Based on our practice, patients reach specialists too late (40% already undergoing chronic kidney disease stage 1). However, several strategies were implemented in order to reverse this trend, among which were: the setting up of a professional network (via emails and Google groups), team training at different locations, videoconferences, and calling the Ministry of Health to action. Additionally, we developed a project through telemedicine to inform patients and empower caregivers throughout Argentina.

Keywords: Spina bifida, interdisciplinary care, professional network, telemedicine

DOI: 10.3233/PRM-170444

Journal: Journal of Pediatric Rehabilitation Medicine, vol. 10, no. 3-4, pp. 211-214, 2017