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. 2017 Feb 1;115(1):71-75.
doi: 10.5546/aap.2017.71.

[Transition experience of patients with neuromuscular disease]

[Article in Spanish]
Valeria Greif  1 , Florencia Ugo  1   2 , M Fernanda de Castro Pérez  1 , Julieta Mozzoni  1 , Verónica Aguerre  1 , Milagros Saldías  1 , M Soledad Monges  1 ; Programa de Atención, Docencia e Investigación de Pacientes con Enfermedades Neuromusculares del Hospital de Pediatría SAMIC “Prof. Dr. Juan P. Garrahan”
Collaborators, Affiliations
Free article

[Transition experience of patients with neuromuscular disease]

[Article in Spanish]
Valeria Greif et al. Arch Argent Pediatr. .
Free article

Abstract
in English, Spanish

Neuromuscular diseases are mostly genetic disorders, with chronic and progressive course. Affected people are at high risk of developing physical and emotional disabilities. In the last decades, the advance in technology and science has increased chronic pediatric patients survival rate, thus requiring an ongoing assistance in adult hospitals, making the transition a necessity and a challenge. This article reports the clinical practice designed between Hospital Garrahan and Hospital Ramos Mejía for the transition of 27 adolescents during 2015, setting achievements, findings and challenges resulting from this experience.

Las enfermedades neuromusculares tienen, generalmente, origen genético, con evolución crónica y progresiva y con posibilidades de generar limitaciones físico-emocionales. En las últimas décadas, los avances en salud aumentaron la sobrevida de niños y adolescentes con estas enfermedades, y convirtieron la transición al sistema de salud de adultos en una necesidad y un desafío. Este artículo relata la práctica asistencial diseñada e implementada por el equipo interdisciplinario que atiende a pacientes con enfermedad neuromuscular del Hospital Garrahan junto con el Hospital Ramos Mejía para la transición de 27 adolescentes durante 2015. Además, plantea logros, aprendizajes y desafíos surgidos de esta experiencia

Keywords: adolescence; chronic disease; health transition; neuromuscular diseases.

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