Requirements for systemic sclerosis expert centres in the Netherlands: A Delphi consensus study.

Area of Science:

• Rheumatology
• Autoimmune Diseases
• Healthcare Management

Background:

• Systemic sclerosis (SSc) is a rare, complex disease requiring specialized multidisciplinary care.
• Lack of defined expert centers hinders collaboration and patient information.
• Establishing clear criteria for SSc centers is crucial for optimal patient management.

Purpose of the Study:

• To develop a set of requirements for two types of SSc centers: expert centers and treatment centers.
• To establish a nationwide structure for organized and transparent SSc care in the Netherlands.
• To inform the development of certification criteria for SSc centers.

Main Methods:

• A three-round Delphi study involving rheumatologists from Dutch university and regional hospitals.
• Inclusion of a patient panel (N=22) in the consensus process.
• Criteria categorized into medical care, caseload, collaboration, research, and staff training, with consensus defined as >85% agreement.

Main Results:

• Consensus was reached on 45 items for systemic sclerosis expert centers and 29 items for systemic sclerosis treatment centers.
• Specific requirements included minimal caseloads for annual suspected SSc cases and total patients under care.
• The Delphi process involved 47 rheumatologists in round 1, 35 in round 2, and 43 in round 3.

Conclusions:

• Requirements for systemic sclerosis care centers in the Netherlands have been established.
• The study provides a model for other countries seeking to organize SSc care.
• Future work should focus on evaluating the feasibility of certifying these centers.