Survey IDs Top Factors Influencing Raynaud’s Treatment Choice

An international survey found that the ability to use one’s hands, physical symptoms, and the chance to prevent more severe problems are among the top factors taken into account by scleroderma patients when considering a therapeutic regimen for Raynaud’s phenomenon.

Raynaud’s is a condition in which the fingers and toes feel numb and prickly, and are frigid in response to cold temperatures or stress.

Additional findings revealed that the risk of side effects impacted the treatment choice for most of the survey’s respondents. In fact, nearly a third of the patients reported that they would prefer a non-pharmacological treatment to manage their Raynaud’s.

The results of the survey were published in the journal Arthritis Care & Research, in a study titled “Factors influencing patient decision-making concerning treatment escalation in Raynaud’s phenomenon secondary to systemic sclerosis.”

Most patients with scleroderma, or systemic sclerosis (SSc), develop what is called secondary Raynaud’s. An early sign of the disease, Raynaud’s is linked with significant pain and disability.

To date, however, there is no validated instrument to objectively assess the severity of Raynaud’s in people with scleroderma. Thus, the choice of treatment for this complication is usually discussed between patient and physician — taking into account symptom severity and the likelihood of effectiveness of a particular approach.

Although experts have provided recommendations regarding treatment, no guidelines currently exist on how to initiate therapies, on dosing, or on the course of action that should follow if a first therapeutic strategy fails.

To address these shortcomings, a team of researchers in the U.K. and the U.S. launched an international online survey in 2020 called “PAtient Survey of experiences of RAynaud’s Phenomenon,” or PASRAP.

The goal was to investigate the factors that influence the decision-making of scleroderma patients regarding treatment for Raynaud’s.

Of the total 1,718 Raynaud’s patients who completed the survey between April and May 2020, 747 reported having the condition as secondary to SSc. This subgroup had a mean age of 54.7, and 93.5% were women. Among the most represented countries in the survey were the U.S. and the U.K. — more than half of the respondents (58.9%) lived in the United States, while 14.5% said they resided in Great Britain.

Patients had a high prevalence of damage to the blood vessels of the fingers and toes, known as digital vasculopathy. This damage included ulcers — small sores — in 38.9%, and gangrene, which refers to tissue death caused by a lack of blood supply, in 20.1%. Additionally, 10.8% of the patients had pulmonary arterial hypertension, characterized by the narrowing of the smaller blood vessels that transport blood through the lungs.

A total of 40.5% were being treated with calcium channel blockers, which work as vasodilators — therapies that widen blood vessels. Other vasodilators included phosphodiesterase type 5 inhibitors (21.3%). Therapies for high blood pressure, including angiotensin-converting-enzyme inhibitors or angiotensin receptor blockers, were used by 16.7% of the patients.

The majority of the participants (56.3%) said their Raynaud’s symptoms were under control. Yet, 30.9% reported being only “somewhat satisfied” with their current treatment for managing Raynaud’s, and 10.4% were “somewhat dissatisfied.” In all, 10.8% of respondents said they were “very dissatisfied.”

The top five reasons for considering a new Raynaud’s treatment included the individuals’ inability to use their fingers properly due to the disease, ulcers in one or more fingers, and worsening pain or discomfort. An increased frequency of severe attacks, and the question of whether other treatment could help with internal complications were other reasons for scleroderma patients to consider new treatments.

In particular, people with limited cutaneous sclerodera — marked by the accumulation of scar tissue in the heart, lungs, intestinal tract, and other organs — ranked digital ulcers as the main reason for changing their treatment.

When asked about side effects, almost half of participants (47.1%) said they were unwilling to experience any adverse effects from a treatment. The majority, however, said they would be willing to experience some side effects if a treatment were effective. Notably, these patients reported they were more likely to accept limited versus severe side effects, such as mild headaches, nausea, and lightheadedness.

In the advent of poor control over Raynaud’s symptoms, 52.8% said they would consider adding a new therapy to their regimen, while 40.9% would stop the current treatment and start a new one.

More than one-quarter of the participants would increase the dosing of their current therapy (28.8%) or focus on other, non-pharmacological approaches (29.7%).

Overall, “our study provides a number of novel insights into patient’s beliefs and preferences about treatment escalation,” for the condition, the researchers wrote.

“Future research is required to optomise treatment for SSc-RP [Raynaud’s phenomena] including the need for decision analysis to help patients determine their preferences for management and to establish consensus whether such an approach should also seek to modify SSc-related digital and/or systemic vasculopathy,” they concluded.