Hand function, ulcer prevention top concerns for patients with SSc-related Raynaud’s
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Inability to use one’s fingers and the appearance of new ulcers are among the top five concerns that would prompt treatment escalation in patients with Raynaud’s phenomenon secondary to systemic sclerosis, according to data.
The researchers, who published their findings in Arthritis Care & Research, additionally concluded that potential side effects influence the acceptability of drug treatments, and that many patients prefer nonpharmacological therapy.
“Raynaud’s phenomenon (RP) is very common and almost universal in patients with systemic sclerosis, often referred to as ‘scleroderma,’” Michael Hughes, BSc (Hons), MSc, MBBS, MRCP, PhD, of the Royal Hallamshire Hospital, Sheffield Teaching Hospitals NHS Foundation Trust, in the United Kingdom, told Healio Rheumatology. “Although there are a wide range of drug treatments available for RP, these are seldom fully effective and there is no guidance how these should be initiated/escalated in clinical practice.”
To analyze patients’ priorities when deciding whether to escalate treatment for Raynaud’s phenomenon secondary to SSc, Hughes and colleagues examined data from the Patient Survey of experiences of Raynaud’s Phenomenon (PASRAP) survey. According to the researchers, PASRAP was an international survey aim at assessing patients’ experiences with Raynaud’s phenomenon, including treatment approaches.
Questions covered demographic and disease-related information, impacts and severity of Raynaud’s syndrome, current treatments, reasons to change current management strategies, and willingness to experience side effects. The survey was open to adults with clinician-diagnosed Raynaud’s syndrome. A total of 1,718 participants completed the survey between April and May 2020. Among the respondents, 747 reported SSc as their underlying diagnosis. Hughes and colleagues focused their analysis on these 747 adults.
According to the researchers, 56.3% of the included respondents reported that their Raynaud’s symptoms were well-controlled. Out of a total of 13 possible factors, participants ranked these five as their highest concerns when deciding to escalate treatment:
- inability to use their fingers properly;
- development of new digital ulcers;
- worsening pain or discomfort;
- more severe attacks; and
- the promise of improving internal problems.
In addition, 47.1% reported they were concerned about potential treatment side effects despite their symptoms not being adequately controlled. These same participants were also more likely to accept “mild” — about 20% to 40% — rather than “severe” — about 2% — side effects. Respondents were also open to different management strategies for uncontrolled Raynaud’s, with 52.8% willing to add a new treatment in combination with their existing therapy, 40.9% being open to drug substitution, 28.8% willing to increase their current dose and 29.7% open to focusing on non-pharmacological options.
“We identified the reasons, including the perceived importance why patients with SSc would consider starting a new treatment for RP,” Hughes said. “These included hand function, physical symptoms and preventing digital and internal organ-based complications. Side effects significantly impact on drug acceptability. Patients would consider both pharmacological and non-pharmacological treatment approaches. Strategies include drug substitution, adding drug therapies in combination, and increasing the dose of current treatment.”
“Our study provides novel insights into patient’s beliefs and preferences about treatment escalation for SSc-RP,” he added. “Future research is required to understand patient decision-making to provide practical recommendations for drug treatment of SSc in patients with RP.”
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