IMPLEMENTATION OF PATIENT NAVIGATION IN THE RARE DISEASES PROGRAM OF A UNIVERSITY HOSPITAL: AN EXPERIENCE REPORT ON NURSING PRACTICE

Abstract

Introduction: Patient navigation is an effective strategy to reduce care barriers and optimize therapeutic pathways, particularly for individuals with rare diseases, whose journeys from suspicion to diagnosis and treatment are often marked by fragmentation, long delays, and multiple care needs. Objective: To present an experience report on the successful implementation of a patient navigation model in the Rare Diseases Program of a University Hospital. Method: This descriptive experience report was conducted in a University Hospital in southeastern Brazil. Implemented in 2023, the model included nursing consultations for triaging patients with suspected or confirmed rare diseases, initial guidance on diagnostic options, scheduling of medical and multidisciplinary evaluations, coordination of institutional workflows, external referrals, genetic counseling before and after testing, and continuous follow-up throughout the diagnostic process. Joint consultations with the clinical geneticist were also incorporated to enhance comprehensive care. Results: The navigation model enabled structured patient inclusion in the Program, providing individualized follow-up and proving to be a key tool for care organization and improved quality of attention to individuals with rare diseases within the hospital setting. The model facilitated better care flow and expanded support for patients and their families. Conclusion: The experience demonstrated increased efficiency in case management, enhanced patient and family support, and improved integration among the Institution’s healthcare sectors.