The Patient Voice in Atopic Eczema Guidelines: How Do We Make it Standard Practice?

Area of Science:

• Dermatology
• Health Services Research
• Patient Engagement

Background:

• Patient and caregiver involvement in clinical guideline development is recommended but underrepresented in atopic eczema guidelines.
• Existing general guidance on patient involvement needs adaptation for the specific context of atopic eczema.

Purpose of the Study:

• To identify specific factors for sustainable patient and caregiver involvement in atopic eczema guideline development.
• To propose a framework for integrating patient perspectives into standard guideline development practices.

Main Methods:

• Review of general principles for patient involvement in guideline development.
• Analysis of specific considerations for atopic eczema, including disease heterogeneity and psychosocial impact.
• Identification of barriers and facilitators to patient participation.

Main Results:

• Effective involvement requires selecting diverse patient and caregiver representatives.
• Addressing the psychosocial impact and providing support are essential for equal partnership.
• Patient priorities may differ from healthcare professionals', necessitating their inclusion.

Conclusions:

• Sustainable patient involvement in atopic eczema guideline development requires tailored strategies.
• Overcoming resource and policy barriers is key to ensuring culturally appropriate guidelines.
• A framework is proposed to standardize patient and caregiver participation in guideline development.