How do patients define Raynaud's phenomenon? Differences between primary and secondary disease.

Area of Science:

• Rheumatology
• Vascular Medicine
• Patient-Reported Outcomes

Background:

• Raynaud's phenomenon (RP) is a vascular disorder characterized by exaggerated vasoconstriction.
• Understanding patient definitions of RP is crucial for improving patient-centered care and outcome measures.
• Differences in lived experiences may exist between primary RP and secondary RP, particularly when associated with connective tissue diseases like scleroderma.

Purpose of the Study:

• To explore how individuals define Raynaud's phenomenon (RP) based on their personal experiences.
• To investigate potential differences in RP definitions between patients with primary RP and secondary RP.

Main Methods:

• An international online survey was distributed to individuals with RP.
• Qualitative content analysis was used to code open-text responses defining RP.
• Thematic prevalence was compared between self-reported primary and secondary RP diagnoses.

Main Results:

• 1345 respondents from 45 countries participated, with 17% reporting primary RP and 83% secondary RP.
• Over half of respondents defined RP by affected body parts, color changes, pain, or triggers.
• Primary RP patients more frequently emphasized functional impact and pain, while secondary RP patients focused on specific symptoms, color changes, and complication management.

Conclusions:

• Distinct differences exist in how primary and secondary RP patients define their condition, reflecting varied lived experiences.
• These findings highlight the need for tailored outcome measures in RP research and clinical practice.
• Patient definitions underscore the importance of considering quality of life and specific symptom management in RP assessment.