Diseño e implementación de un modelo de atención transdisciplinaria para pacientes con angioedema hereditario, en una institución de salud colombiana

Abstract

Background: Hereditary angioedema is an orphan disease that requires a comprehensive approach for effective care.

Objectives: Describe the design and implementation of a transdisciplinary care model for patients with hereditary angioedema in Colombia.

Methods: Descriptive longitudinal observational study. 140 patients with hereditary angioedema were included in a transdisciplinary care model for 1 year. Seizure rates, hospitalizations, emergency room visits, quality of life, and pharmacological adherence were measured.

Results: The model was associated with reductions of 76% in seizures, 66% in hospitalizations, and 87% in emergency room visits. Pharmacological adherence increased 19% and was complete after 4 months. The quality of life increased significantly.

Keywords: hereditary angioedema, orphan diseases, care model, transdisciplinary, quality of life