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

To examine how people define Raynaud’s phenomenon (RP) based on their lived experiences and explore if differences exist depending on primary or secondary RP diagnosis.

An international survey was sent to people with RP through health systems, foundations, and social media. Qualitative coding of responses to an open text question regarding one’s own definition of RP was performed and themes were identified. The prevalence of themes among the sample and then comparisons between themes among people who self-reported primary versus secondary diagnosis of RP were performed.

There were 1345 respondents from 45 countries (mean age 51.5 years, 93% female) who defined RP in their own words; 17% reported primary RP and 83% reported secondary RP (69% of secondary RP was scleroderma-related, n = 927). Over half defined their RP by describing the body parts affected, color changes, pain, and triggers or situations in which an episode occurs. Patients with primary RP more frequently defined RP in terms of its impact on function/quality of life and pain compared to those with secondary RP (34.5% versus 25.3%, respectively, p=0.004; 54.0% versus 46.8%, p=0.05). Patients with secondary RP more frequently included specific body parts, color change, the management of attacks, and other digital vascular complications in their definition of RP.

We have identified differences in how people with primary and secondary RP define RP, in terms of how they feel and function. Our findings have implications for the domains of outcome measures for assessing RP within different patient populations.