• systemic sclerosis
• patient perspective
• epidemiology

Raynaud’s phenomenon (RP) manifests as episodic vasospasm of the extremities (hands and feet) in response to cold exposure. RP can be primary (idiopathic) or secondary to underlying disease such as systemic sclerosis (SSc). Attacks of RP are often associated with digital colour changes reflecting local tissue perfusion and oxygenation. RP results in pain, numbness, impaired function and reduced quality of life.1 2 The obliterative vasculopathy of SSc can result in digital ulceration. Diagnostic delay of secondary RP remains a major unmet need. The time between the onset of RP and emergence of the first non-RP symptom can be over 5 years.3 This contributes to delay in diagnosis; with >25% of women not diagnosed with SSc for 10 years after the emergence of RP.4

Against this background, Scleroderma Raynaud’s UK (SRUK) led an initiative to devise a ‘Raynaud’s test’ for visitors to their website (https://www.sruk.co.uk/raynauds/raynauds-test/). The test, developed by SRUK and RP experts, comprises questions derived from existing RP classification criteria5 6 to determine if RP is likely and whether further assessment is necessary (table 1). No identifiable information is collected. Algorithms provide respondents with statements indicating ‘This is unlikely to be Raynaud’s’ or that ‘You may have Raynaud’s’. Participants are encouraged to seek medical advice if they experience painful or frequent symptoms, or have other concerns. All participants answering ‘yes’ to question 5 (irrespective of other responses) are given recommendations to seek assessment in primary care (table 1).

We examined anonymised data from 18 840 respondents from 43 countries who completed the ‘Raynaud’s test’ between 22/06/2017 and 21/06/2018. We have no information on who completed the test or how they acted on the information supplied in response to their answers. The figures are solely presented to provide some impression of the possible demographics of those completing the test. RP was deemed ‘unlikely’ in 1138 (6%). The majority of respondents were informed they ‘may have Raynaud’s’ (14140, 75%). The remaining 3562 respondents (19%) were also informed that they may have Raynaud’s, but given additional advice to seek medical attention having reported the development of digital ischaemic lesions (yes to question 5). Accepting the inevitable selection bias accompanying positioning the test on the SRUK website, the considerable proportion of respondents reporting features that might represent secondary RP was of interest and, it is hoped, may have encouraged some respondents to seek medical attention when they had not previously done so.

Utilisation of our Raynaud’s test highlights the large number of people visiting patient organisation websites for information and the potential of patient organisations to encourage involvement of people in their own healthcare. Our findings also highlight the global reach of ‘National’ web-based patient organisations. The internet has provided the general public with a readily available tool for the self-investigation of new experiences/symptoms that might indicate the presence of disease. Carefully designed tools of this nature can positively influence health utilisation by providing reassurance to people interested to learn about RP and encouraging earlier medical assessment of people at risk of potentially life-threatening disease such as SSc. Collaboration between healthcare professionals, patient organisations and the public is at the heart of important initiatives such as the European League Against Rheumatism ‘Don’t Delay, Connect Today!’ campaign, that is seeking to raise awareness around the importance of early diagnosis.7 The diagnostic potential of mobile health technology is fast becoming an important tool for influencing patient referral processes and can be particularly valuable for people living in remote areas. We must, however, be alert to the dangers of diagnostic inaccuracy and incorporate appropriate safeguards that ensures timely secondary care assessment using diagnostic tools such as nailfold videocapillaroscopy in high-risk patients.8 9