Preferences for coordinated care for rare diseases: discrete choice experiment

Area of Science:

• Health Services Research
• Patient Experience
• Rare Disease Management

Background:

• Coordination of care for rare diseases is often suboptimal.
• Understanding patient, carer, and healthcare professional preferences is crucial for improving care coordination.
• Rare diseases affect a significant population requiring tailored healthcare approaches.

Purpose of the Study:

• To examine patient, parent/carer, and healthcare professional preferences for care coordination attributes in rare diseases.
• To identify key factors influencing service design for better rare disease care coordination.
• To inform policy and practice regarding coordinated care for individuals with rare conditions.

Main Methods:

• A discrete choice experiment was employed using online surveys.
• Participants included patients, carers, and healthcare professionals across the UK.
• Choice scenarios evaluated preferences for cost, record access, expertise, care coordinator role, specialist access, and emergency plans.

Main Results:

• All evaluated attributes significantly influenced preferences for care coordination services.
• Patients and carers showed similar preferences, prioritizing greater autonomy in care coordination.
• Healthcare professionals differed, preferring more autonomous care coordinators and formal emergency plans.

Conclusions:

• Individuals with rare diseases highly value coordinated care, aligning with policy objectives.
• Specific attributes like cost, access to records and expertise, and emergency planning are critical for service improvement.
• Addressing differing preferences between patients/carers and professionals can optimize rare disease care coordination.