Objective: To evaluate whether patients can predict attacks of RP (if so, this would have implications for developing new treatments) and to evaluate the impact of RP attacks on quality of life (QoL).
Methods: Individuals with RP were invited through international patient associations to participate in an online survey.
Results: Responses from 443 subjects with self-reported RP from 15 countries were evaluable. The mean age of subjects was 41 years (91% female). Fifty-eight per cent of subjects reported they could predict at least 51% of RP attacks, and 57% could predict attack severity either fairly well or better [with 43% predicting severity only poorly (30%) or very poorly (13%)]. Sixty-four per cent of subjects reported a poor or very poor current ability to prevent/control RP attacks. One hundred and eighty-two subjects (41%) reported current or previous use of medications for RP: 82% reported at least one currently used medication being tolerated, but only 16% reported at least one current medication being effective. Most subjects (78%) reported making at least one life adjustment due to RP, with more in subjects with secondary RP compared with primary RP (87% vs 71%, P = 0.001). Current QoL with RP was impaired [mean = 6/10 (10 best imaginable)] and secondary RP subjects reported a greater absolute improvement when asked to imagine their QoL without RP (2.3 vs 3.3 P = 0.0002).
Conclusion: Subjects' ability to predict RP attacks is limited. Treatments were generally considered tolerable but seldom fully effective. Our results confirm an unmet need for new treatments. RP significantly impacts on QoL in all subjects.
Keywords: Raynaud’s phenomenon; impact; predict; quality of life; severity; systemic sclerosis.
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