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Original research
Ref Number: APCP-OP-17

Empowering Navigation: Implementing a Nurse-Led Interdisciplinary Model for Children with Rare Diseases

Cui Cui¹, Qin Zhang¹, Xiaoqiong Wei¹
1- Children’s Hospital of Chongqing Medical University, China
Corresponding Author: Cui Cui (cuicui17@126.com)
Abstract Body
Introduction: Professionals with advanced expertise and coordination skills, such as Rare Disease Specialist Nurses (RDSNs), are recognized as pivotal in integrating medical services and optimizing patient care pathways. Objectives: This study aims to systematically construct and evaluate an interdisciplinary collaborative care model led by pediatric rare disease specialist nurses, grounded in the Synergistic Nursing Theory and the American Association of Critical- Care Nurses (AACN) Healthy Work Environment Framework. Methods: A prospective, single-center, pre- and post-intervention controlled study design was employed. The study was conducted at a national tertiary-level children\'s hospital in Chongqing. The core interventions led by the specialist nurses included: establishing a navigation and coordination center; conducting comprehensive assessments and developing individualized plans; providing standardized education and empowerment; enhancing family self-management capabilities; and facilitating resource linkage and seamless referrals. Results: Post-implementation, the proportion of interdisciplinary admissions nearly doubled (from 32% to 58%, P < 0.001), and specialized nursing consultations increased by 75% (P < 0.001). RDSNs reported significant improvements in interdisciplinary collaboration and perceptions of a healthy work environment (P < 0.001). Importantly , this enhanced collaboration was achieved without an increase in adverse events (P > 0.05), confirming the model\'s safety . Conclusions: This RDSN-led model enhanced team collaboration, resource utilization, and nurses\' professional experience, offering a replicable framework for complex chronic care.This research provides a replicable practical example for optimizing interdisciplinary collaborative care for children with other complex chronic conditions.
Keywords: Rare diseases; Specialist nursing; Interdisciplinary care
Presentation Type: Original research
Disclaimer: The Views and opinions expressed in the articles are of the authors and not of the journal.
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