Developing a rare disease chronic care model: Management of systemic sclerosis (MANOSS) study protocol

Area of Science:

• Rare disease management
• Chronic care models
• Implementation science

Background:

• Systemic sclerosis (SSc) patients in Switzerland lack coordinated, specialized care and self-management support.
• Current care models do not adequately address the needs of individuals with this rare autoimmune condition.
• Technological advancements offer opportunities to improve care delivery for SSc patients.

Purpose of the Study:

• To develop an eHealth-enhanced Chronic Care Model for systemic sclerosis (SSc) patients in Switzerland.
• To improve chronic illness management and self-management support for individuals with SSc.
• To ensure contextual relevance and stakeholder buy-in for the new care model.

Main Methods:

• An explanatory sequential mixed-methods study involving surveys and interviews for contextual analysis.
• Broad stakeholder involvement, including patients and healthcare professionals (HPs), for co-creation of the care model.
• A Delphi study approach to refine and reach consensus on the testable model of care.

Main Results:

• A participatory approach is crucial for developing a contextually appropriate care model for SSc patients.
• Stakeholder involvement is key to co-creating a comprehensive and effective chronic care model.
• The study identified a need for reengineering current care pathways, incorporating technological solutions.

Conclusions:

• The developed chronic care model aims to improve care disparities for systemic sclerosis patients.
• Feasibility testing and implementation are planned to evaluate the model's impact on health disparities.
• The MANOSS study provides a framework for improving care for rare diseases through stakeholder-driven innovation.