Improving organisation to improve care: ERN ReCONNET organisational reference model for systemic sclerosis patients'...

Area of Science:

• Rheumatology and Immunology
• Healthcare Management
• Patient Care Coordination

Background:

• The European Reference Network for Rare and Congenital Network (ERN ReCONNET) developed the RarERN Path© methodology to optimize care delivery.
• Systemic sclerosis (SSc) management requires coordinated, multidisciplinary care pathways.

Purpose of the Study:

• To apply the RarERN Path© methodology to systemic sclerosis care within ERN ReCONNET centers.
• To establish a flexible, feasible organizational reference model for optimizing SSc care pathways internationally.

Main Methods:

• The RarERN Path© methodology involves a six-phase process.
• It includes mapping existing patient journeys, co-designing common pathways with stakeholders, and defining key performance indicators.

Main Results:

• The developed model emphasizes streamlined referral processes for direct patient access to specialized units.
• Key recommended services include specialized consultations (cardiology, pulmonology, etc.), infusion therapy, wound care, occupational therapy, and physiotherapy.

Conclusions:

• The organizational model supports the implementation of evidence-based recommendations for systemic sclerosis management in clinical practice.
• This framework facilitates the integration of specialized services for comprehensive SSc patient care.