Results of the RRDi Member Survey on Rosacea
Many thanks to those of you who responded to our recent survey. This was assembled with input from our Medical Advisory Committee, who submitted the questions they like to ask patients when presenting with possible rosacea. Here is a summary of the responses.
The survey population consists of 292 respondents, (74%) of whom are female. Roughly half of these are 41-60 years old, with a quarter each in the 21-40 and over 60 age ranges. 14% are RRDi members. The vast majority of respondents (98%) have received a confirmed diagnosis of rosacea from a physician. Consistent with what we know about rosacea, most respondents started experiencing symptoms as adults (47% early adulthood, 38% late adulthood).
As expected, redness is the most common skin symptom experienced (68% always or usually; 24% sometimes), with lesions (bumps or pimples), dry skin, stinging and flushing also experienced sometimes, usually or always, by the majority of respondents.
Skin symptoms predictably increase for the vast majority of respondents following periods of stress, either physical (sun, wind, cold) or emotional (psychological strain or embarrassment).
Ocular manifestations of rosacea are common in the respondent population: dry eyes are experienced sometimes, usually or always by 73%, and other ocular symptoms by 64%.
Ocular symptoms may be aggravated by exposure to cigarette smoke (122 yes, 75 no) or chlorinated swimming pools (113 yes, 67 no), but less so by drinking alcohol (68 yes, 123 no) or eating spicy foods (41 yes, 156 no). This is perhaps not surprising given that smoke and chlorine are direct physical irritants, while consuming alcohol or spices would have an indirect effect on inflammation of the eyes.
In addition, a surprising number reported experiencing a stinging sensation in response to the drops used by ophthalmologists to numb the eye during eye exams: 55 yes to 72 no (the remainder of respondents didn’t know).
34% of respondents have been diagnosed with a major gastrointestinal disorder such as Crohn’s disease, ulcerative colitis or irritable bowel syndrome, while 29% always or usually and 47% sometimes experience gastrointestinal distress. 23% have experienced food poisoning prior to onset of rosacea, while 55% haven’t and 22% don’t know.
Specific foods or drinks are recognized as triggers for rosacea in 58% of respondents. Of the 162 respondents who listed their known dietary triggers, alcohol was the most common, mentioned by 67% of these respondents. This was followed by spicy foods at 48%. Other common triggers include hot temperature foods (19%), sugar (13%), tomatoes (13%), coffee or tea (12%) and chocolate (12%).
Non-food triggers were reported by 169 respondents, of which heat (38%) and stress (37%) proved to be by far the most common factors in rosacea flare-ups. Other common aggravating factors include sun, cold, wind, exercise, topicals (such as moisturizers and cosmetics) and hormones. Also mentioned were such factors as temperature changes, fatigue, embarrassment, humidity, dryness and allergies.
For treating facial symptoms, the majority of respondents preferred to use either topical (40%) or combination treatment (45%), rather than only oral medications (16%). The vast majority (93%) have already tried some sort of medical treatment for rosacea. Light therapies were not included in this survey, but would be interesting to investigate.
Respondents were asked to list medications they had tried which showed at least some benefit for their rosacea symptoms, to which 213 people provided sufficient details.
- Antibiotics or antibacterials were by far the most common medications reported, tried with some benefit by 89% of these respondents. The most common antibiotics listed were metronidazole and doxycycline; the antibacterial benzoyl peroxide was also included in this category.
- 10% of respondents listed antiparasitic agents, primarily ivermectin (the active ingredient in Soolantra). Interestingly, Soolantra was the only medication accompanied by comments of satisfaction with results (“so far it has worked the best”; ”soolantra saved me”; “Soolantra CURED it!”).
- Retinoids and steroids each showed benefit for 9%.
- Brimonidine (the active ingredient in Mirvaso) was reported by 8%.
- Sulfur products were also reported by 8%. Most of these were the combination sulfacetamide plus sulfur medications (these were also included in the antibiotic count), but sulfur cleansers and facial masks were also mentioned.
- Herbal and non-prescription treatments were not specifically asked about in the survey, so the 6% reported here is certainly an underestimate, and includes only those respondents who gave a specific brand or chemical name. However, it was interesting that Honevo manuka honey products were mentioned several times, as were calamine lotion and tea tree oil.
- Immunosuppressants, including Elidel and pimecrotimus: 2%.
- Antifungal agents, including nizoral, ciclospirox and clotrimazole: 2%.
- Acariacide (anti-mite agents), including Eurax and permethrin: 1%.
- Beta-blocker (propanolol): 1%.
- While anti-depressants are not rosacea medications as such, it was interesting to note that 1% included these here.
Most respondents reported one or more medications that had proved ineffective in treating their rosacea. While many included comments such as “Everything else, I’ve tried them all!”, “too many to list” or “all of them”, 136 respondents included specific names, which are summarized below. Results are very similar to the previous graph. It appears that many of us are trying several rosacea medications, and finding only limited benefit from most of them.
85 respondents described specific medications they had tried and discontinued due to unacceptable side-effects, which are summarized in the graph below. Comments expressed by several respondents described the “severe rebound redness” experienced in response to Mirvaso (brimonidine), and the burning caused by Finacea (topical azelaic acid).
28% of respondents have tried topical steroids for treating rosacea (62% no, 10% don’t know). Of these, 36% experienced recurrence of symptoms following treatment (22% no; 42% don’t know). 33% of respondents have treated ocular symptoms at some point (61% no, 6% don’t know), and for those who have treated, 9% experiences a worsening of ocular symptoms following treatment (56% no, 35% don’t know).
A wide variety of skin care products for cleaning and moisturizing the face are currently used by the respondents, and 60% report having discontinued using some skin care products due to side effects. “Too many to list” is a frequent comment about these non-tolerated products. Increased irritation, dryness, redness, flushing, stinging and lesions are common reactions to skin care products, with itchiness and allergic reactions reported occasionally also.
The psychological effects of rosacea have to date been much less explored than physiological effects, but as with any chronic condition, especially one so visible, rosacea is bound to affect us in more ways than purely physical. As seen from the graph below, the majority of respondents sometimes prefer avoiding social contact due to rosacea symptoms, can feel depressed, and that rosacea affects their quality of life.
- Do you prefer to avoid other people when your symptoms are severe?
- Do you ever miss work or social events due to your skin?
- Do your symptoms ever make you feel depressed?
- Does rosacea affect the quality of your life?
The graph below summarizes these questions for each respondent. Only 10% of respondents answered no (or not sure) to all of these questions, so 90% of us are expressing that rosacea has significant negative psychological effects. Almost half of all respondents (44%) answered yes to all four of these questions.
Several themes emerged in response to the open-ended questions “What bothers you most about your rosacea?” and “How does rosacea affect your quality of life?”. Many comments of course reflect outward appearances: the redness, dryness, lesions, etc, but there are strong feelings of anxiety and frustration expressed in several different ways, as typified by the examples below.
A primary complaint regards the feeling of being judged by others:
- “People ask ‘what’s wrong with your face?’”
- “People stare at it and ask if I’m sunburned or allergic to something.”
- “It’s so embarrassing, people feel the need to tell me my nose is red like I don’t know.”
- “people think I drink because of redness”
- “I look like a binge drinker with the redness over the nose and cheek apples.”
A related complaint from our primarily adult population is feeling immature:
- “like I’m a teenager with oily pimply skin when I’m 45 years old”.
- “Still having “breakout” or pustules at the age of 52 is embarrassing and defeating.”
The loss of self-esteem rosacea can bring is very frequently described:
- “I find that it not only affects my social life but also my personal relationships.”
- “Feeling unattractive.”
- “Always is somebody asking about it, and it makes me feel worse.”
- “It kills my self confidence when my face is broken out.”
- “I can’t even look in the mirror at times.”
- “Every time I am anxious or nervous it shows; it’s like a violation of my privacy manufactured by my own face.”
Chronic anxiety accompanying rosacea is also common:
- “It really just takes over your life. Trying to control it is overwhelming and devastating. You never stop thinking about it and are always concerned you’re doing something wrong that will set it off. It’s no way to live.”
- “I am getting stressed every day as I can’t cure this illness”
- “It’s the first thing I think about when I wake up and the last thing I think about before falling asleep.”
- “am very concerned about the evolution of the disease which makes me always very anxious”
- “Feel depressed and very anxious that it will happen and when it does I feel ugly and embarrassed. Very stressful”
This anxiety can easily lead to withdrawal from social situations:
- “ It makes me want to avoid all social gathering.”
- “Spend too much time thinking and worrying about my skin. Causes self-consciousness and social withdrawal.”
- “I feel ashamed of the redness of the spots and bumps. It makes me want to avoid all social gathering.”
- “Don’t want to see anyone. Don’t want to date anyone. Want to stay at home. Looking at a mirror makes me angry.”
- “feelings of depression,don’t want to go out,miss social events,don’t want to interact with people.”
- “You avoid social contact because of the rosacea, but you actually don’t really want to avoid social contact.”
Effects on family and friends were mentioned:
- “I feel sorry for my husband that he has to go out with me looking like this.”
- “Feel self conscious at social events especially at my kids school because I know the other kids ask my kids why my face is red.”
Many respondents expressed feeling the need to mask symptoms with cosmetics, and also the frustration this leads to:
- “I am embarrassed for my skin to be seen without makeup”
- “I look diseased and can’t go out without full face of makeup which doesn’t even cover the redness anymore”
- “It takes ages to get ready in the morning… You then have thick makeup that rubs off onto people, phones and clothes.”
- “I am self-conscious that people think I am wearing makeup in inappropriate situations because I am vain, when the real reason is that my rosacea makes me feel insecure about my appearance.”
Others referred to the necessary changes in lifestyle:
- “the constant attention to my diet and facial responses”
- “The difficulty eating out… Not being able to try anti-aging products. Not being able to get facials and makeovers.Not being able to use hot tubs and saunas.”
- “I need to swim to maintain my mobility and you come out looking dreadful with all the make up washed off. I love snorkeling but the goggles irritate my face.”
- “The inability to eat and drink what everyone else is eating and drinking is inconvenient and the indoor heat flushing is painful.”
- “Am very reluctant to go outside during hot weather”
- “Having to have a skin care routine very well calibrated, the constant care, to diminish any social-anxiety.”
- “can not play, exercise, or be in the sun, or in warm place without flushing, stinging or burning of the face.”
- “I have to avoid exposure to sun and cold, which limits outdoor activities.”
The effect of rosacea on professional lives is also described:
- “Terrible facial flushing during performances are keeping me from making personal appearances.”
- “it makes me want to hide, not apply for jobs and no direct eye contact”
- “I feel unconfident. I do not go on interviews because I know they are judging. I am stuck at my current job for the rest of my life.”
- “I am still working in a professional environment and have to meet customers. It kills my self confidence when my face is broken out.”
Also the time and cost of treatment can be significant:
- “Numerous doctor appointments, spending money on treatments, depression, avoiding social situations, etc. all make my quality of life seem worse.”
- “I’ve been offered other topical remedies which my health insurance does not cover, which the pharmacist told me would cost over $400.00 a tube. For something that I don’t even know with certainty will help me.”
- “Rosacea cost me a lot of money in treatments and lost wages. It was not properly diagnosed nor treated for many years.”
Occasional positive, or at least neutral, comments were received to both of these questions:
- “At my age (70) I’m not much bothered about the psychology”
- “Try not to let it [affect my quality of life] if I can”
- “sometimes I feel very sad because of my skin but I think I have to overcome this suffering”
- “It used to bother me but now, with effective management, it doesn’t and i’m accepting of it. Acceptance actually reduces stress and therefore, symptoms.”
- “Upside is communicating with great people having similar issues.”
Thank you once again to those of you who took the time to participate in the RRDi’s survey. I hope this will be of use to both patients and physicians seeking to understand more about the rosacea experience.