aHossein Alinia, MD; aLucy Lan, BA; aSandy Kuo, MD; aKaren E. Huang, MS; aSarah L. Taylor, MD, MPH; a,b,cSteven R. Feldman, MD, PhD aCenter for Dermatology Research, Department of Dermatology, Wake Forest School of Medicine, Winston-Salem, North Carolina; bDepartment of Pathology, Wake Forest School of Medicine, Winston-Salem, North Carolina; cDepartment of Public Health Sciences, Wake Forest School of Medicine, Winston-Salem, North Carolina
Disclosure: The Center for Dermatology Research is supported by an unrestricted educational grant from Galderma Laboratories, L.P. Dr. Feldman is a speaker for Janssen and Taro. He is a consultant and speaker for Galderma, Stiefel/GlaxoSmithKline, Abbott Labs, and Leo Pharma Inc. Dr. Feldman has received grants from Galderma, Janssen, Abbott Labs, Amgen, Stiefel/GlaxoSmithKline, Celgene, and Anacor. He is a consultant for Amgen, Baxter, Caremark, Gerson Lehrman Group, Guidepoint Global, Hanall Pharmaceutical Co Ltd, Kikaku, Lilly, Merck & Co Inc, Merz Pharmaceuticals, Mylan, Novartis Pharmaceuticals, Pfizer Inc, Qurient, Suncare Research, and Xenoport. He is on an advisory board for Pfizer Inc. Dr. Feldman is the founder and holds stock in Causa Research and holds stock and is majority owner in Medical Quality Enhancement Corporation. He receives Royalties from UpToDate and Xlibris. Lucy Lan, Sandy Kuo, Hossein Alinia, Karen Huang, and Sarah Taylor report no relevant conflicts of interest.
Abstract
Background: Rosacea patients commonly employ nonprescription therapies. The authors’ aim was to understand rosacea patients’ perceptions of over-the-counter products, complementary and alternative medicine, and homeopathic therapies. Method: A public, online discussion forum comprising 3,350 members and 27,051 posts provided a source of 346 posts on patient perceptions on alternative rosacea treatments. Results: Three major themes of nonprescription treatment were identified—motivation for use, patient-provider discussions, and experience with these treatments. Perceived medication failure, barriers to treatment, and distrust of physicians drive patients to seek nonprescription therapies. Still, patients prefer to consult a physician on incorporating nonprescription therapies into treatment. Complementary and alternative medicine natural products (19.4% of posts), complementary and alternative medicine practices (16.5%), and homeopathic medicine (3.8%) were commonly discussed. Conclusion: Physicians have an opportunity to be a trusted source of information on the strengths and weaknesses of skin care products and other complementary treatments for rosacea. (J Clin Aesthet Dermatol. 2015;8(10):30–34.)
Rosacea is a frustrating, chronic condition for which prescription treatments yield variable results. Nonprescription skin care products and cosmetics, including mild cleansers and moisturizers, play a role in treatment of the disease.[1–4] There is increasing use of over-the-counter products, complementary and alternative medicine, and homeopathic therapies.[5]
Understanding patients’ viewpoints surrounding nonprescription treatments may help physicians provide patients better guidance for rosacea management, especially considering the paucity of well-designed clinical trials demonstrating convincing efficacy in alternative treatments.[6–8] Patients may be reluctant to share their interest in alternative treatments with their physicians. Online support groups are an increasingly popular arena for patients to share health information and can provide a window on patients’ perceptions.[9] Eighty percent of Internet users living with a chronic condition contribute to an online discussion, a listserv, or another forum concerning health and personal issues.[10] The authors used unscripted comments to a rosacea support site to assess patients’ perceptions of complementary and alternative rosacea treatments.
Methods
A public, online support message board for rosacea sufferers was selected with a large volume of daily posts and plethora of active members (http://rosacea-support.org/ community/). During the period of data collection in August 2013, this website comprised 14 overlying forums; 3,685 topics; 27,051 posts; and 3,350 members. While the free membership is not required to view posts, it is necessary for posting privileges.
Of the 27,051 total posts, stratified random sampling method and selective coding identified 346 posts for analysis (<a title=”Figure 1″href=”https://bwcbuildout.com/jcad/wp-content/uploads/Alinia-Figure-1.jpg”>Figure 1</a>). A sample of 346 posts was analyzed using the Miles and Huberman method for significant discussion themes (<a title=”Table 1″href=”https://bwcbuildout.com/jcad/wp-content/uploads/Alinia-Table-1.jpg”>Table 1</a>).[11] The auhtors report several salient posts and summarize key findings in each section, illustrating insightful patient concerns and thoughts regarding nonprescription treatment in their own words. Institutional review board approval was obtained through Wake Forest University School of Medicine.
Results
The following three major themes drove patient discussion on over-the-counter (OTC), complementary and alternative medicine (CAM), and homeopathic therapies: 1) motivation to seek nonprescription therapy; 2) patient-provider discussions on nonprescription therapies; and 3) nonprescription experience (<a title=”Table 1″href=”https://bwcbuildout.com/jcad/wp-content/uploads/Alinia-Table-1.jpg”>Table 1</a>).
Motivation to seek nonprescription therapy. Perceived prescription failure. Patients expressed dissatisfaction with lack of improvement in rosacea from prescription therapy. Frustrated patients sought online advice for alternative remedies (<a title=”Table 2″href=”https://bwcbuildout.com/jcad/wp-content/uploads/Alinia-Table-2.jpg”>Table 2</a> and<a title=”Table 3″href=”https://bwcbuildout.com/jcad/wp-content/uploads/Alinia-Table-3.jpg”>Table 3</a>). Some found OTC and CAM regimens to be beneficial. The statements below in italics are actual comments from the online discussion forum.
— The doctor prescribed [metronidazole]. I did not see any results from that for three weeks. I have done a lot of research and am taking acidophilus, omega 3, and drinking cranberry juice. As a cleaner, I am using [X]. For a moisturizer, I have found that the moisturizers by [X] work well for me. To cover it up,, I am using [X] truly lasting colour with sun protection factorn (SPF) 15.
After giving up on topical prescriptions, other patients continue to struggle in finding successful nonprescription regimens.
— I started experimenting back in January with alternative treatments because [topical metronidazole] didn’t work and then I paid $60 for [topical azelaic acid] and that didn’t work. I have tried mustard powder…I have ingested baking soda and apple cider vinegar …I changed my diet and added things like chlorophyll … I bought powdered [super food].
Supplementing prescription therapy. Even patients who were pleased with prescription medications utilized nonprescription products in addition to enhance outcome. Patients sought easy-to-obtain OTC products that could supplement prescription therapy.
— So with the help of antibiotics for a while and the use of [metronidazole] and [azelaic acid], my face usually looks much, much better. I use [X] cleaner and a mild moisturizer, which helps.
For some patients, OTC therapy was so effective that they discontinued prescription medication. Some patients report sufficient success with OTC antihistamines to discontinue prescription usage.
— I had switched to [loratadine] from [cetirizine] a few weeks ago…I will be stopping all use of prescription topicals…Early signs: Reduction in facial oil production. Reduction in reoccurring papules and pustules. Overall “clearer” complexion.
Barriers to prescription treatment. Several barriers prevent patients from accessing medical care and thereby receiving prescription therapy. Time and money limitations persuade some patients to try nonprescription therapies. Given the shortage of dermatologists, seeing a dermatologist in a timely manner can be difficult.
— It takes two months to get into see my dermatologist, so I’m very happy to have something to try.
The high cost of healthcare can make nonprescription treatment more appealing.
— If you are not insured at all, or your insurance has high deductibles, the expense of homeopathy is likely more manageable than treatment by an MD.
Distrust of physicians. A minority of posts portrayed negative sentiments toward physicians for rosacea management. General distrust of physicians, second-hand opinions on prescription effectiveness, and under-informed patients were reasons why some patients chose nonprescription treatment.
— I’ve just heard that most of the creams the doctor gives you irritates it and makes it worse (sic).
— The doctor didn’t tell me to use sunscreen, didn’t tell me not to tan or to stay out of the sun, didn’t explain about triggers or ANYTHING… thank God for the web (sic).
At the same time, the majority of posts that mentioned professional care suggested a positive opinion of providers.
— I’m actually happy about my diagnosis because I’ve been floundering around on my own not being able to find what to do for myself. Feels good to have a professional (sic).
Patient-provider discussions on nonprescription therapies. In utilizing nonprescription treatments, many patients valued the input of their physicians. These patients seek professional opinion on safety and efficacy of alternative treatments.
— It’s tough to say whether the stuff works or not….this is at the top of my list for my next doctor’s appointment…I wanted to make sure he supports zinc supplementation (sic).
— It is a good idea to see a doctor who can make a diagnosis.
Several patients experimented with OTC products marketed specifically as rosacea treatment (Table 3). These products were more difficult to source and were purchased online. In seeking a cure, patients were willing to purchase foreign products that were neither United States Food and Drug Adminstration (FDA) certified nor met with approval by their dermatologists.
— I was using ZZ (having sourced it myself), and it seemed to be helping without completely eliminating my flare ups…when I told my dermatologist, he was uncomfortable (wary of unregulated chinese products!), so he started making me up a basic 5% sulphur cream. Again, this was helpful but not totally effective…This in turn led to me searching out other, hopefully stronger, sulphur products.
Nonprescription therapy experience. Trial and error. A common theme among patients utilizing nonprescription therapies was experimentation with a plethora of products and practices. Posts expressed frustration at the seemingly never-ending trials in the attempt to find an effective regimen.
— That is one of the most frustrating things [sic] about this condition, what works for one does not necessarily work for another.
— I don’t think anyone will claim to have been “cured” from rosacea as yet, but there are many treatments that will help you.
Patient expectations. Trial and error was prevalent in posts because rosacea patients had multiple criteria for nonprescription treatments. Patients tried to find non-irritating, multitasking, and affordable products that would effectively treat and cover-up rosacea. Non-irritation was a primary concern, as chemical irritants can exacerbate rosacea.
— Chemical sunscreens don’t seem to sit well with me, in particular PABA caused a major flare.
— I still havent found the ideal makeup yet because I’m so sensitive (sic).
— Can’t find anything that states fragrance free, lanolin alcohol free and definitely does not say hypoallergenic (sic).
In sourcing non-irritating cosmetics among an abundance of products, frustration may arise with the arduous process of trial and error. Patients tend to speak very happily of non-irritating beauty or blemish creams and tinted moisturizers that simplify skin care and makeup regimens.
Patients have also found specialty product lines focused on concealing erythema to be beneficial; such products unfortunately tend to be expensive and sometimes cost-prohibitive.
— Green tinted sunblock and makeup…that is made for rosacea…pretty expensive. I think it was around $140.00.
Treatment goals. In utilizing nonprescription medications, many posts express satisfaction with attaining realistic improvements. Patients were pleased with reaching treatment goals and did not strive for a flawless complexion. Reducing redness and bumps was important to patients in qualifying a treatment as helpful.
— It won’t make your nose less bumpy, but it can help tone down the redness.
— Makeup … It doesn’t cover thickly, but it helps me not look like so much of a monster (sic).
— I am happy if I don’t have pain or bumps in my eyes (sic).
Treatment mechanisms. Patients hypothesized about treatment mechanisms in an effort to understand why their nonprescription treatments worked for them. These patient explanations also attempted to validate usage of OTC, CAM, and homeopathic therapies for other readers.
— Redness can also be caused by the drying effect of the topicals we use to treat rosacea so it’s always worth moisturing two to three times a day (sic).
— When we massage cheeks, nose, and chin, we are helping the body to eliminate toxic waste and training the blood vessels to start working again. After two months of this treatment, I have less pain, less redness, my skin looks smoother.
— More and more research is showing the connection between food allergies and facial complexion breakouts, hives, and itching/dryness. The symptoms can mimic rosacea…this is where people get confused and frustrated (sic).
— A book I read on food for skin health the other day recommended for acne rosacea that I should increase my intake of vitamin B complex, vitamin C, zinc, and silicon.
Group advice. In the pursuit of sampling multiple nonprescription products, it was inevitable that nonbeneficial, even irritating, and potentially harmful results could occur. Patients on the forum regulated posts in an act of watching out for each other.
— I cannot believe what I have been reading above about you all using baby shampoo to wash your eye!…STOP IT NOW (sic).
Other posts encouraged safer, more practical non-prescription remedies
— You are already doing the right thing by seeing a doctor and making an appointment with a derm. In the meantime, try to keep a food diary to see if any food or drink makes it worse.
Discussion
Rosacea patients candidly discuss experiences and thoughts surrounding nonprescription products and practices online, providing valuable insight about their perceptions of rosacea care. Patients experiment with many different OTC, CAM, and homeopathic products and practices to find a personal regimen that works (Table 3).
Although several prescription medications exist, perceived medication failure (perhaps due to poor adherence), barriers to treatment, and distrust of physicians can drive patients to seek nonprescription therapies, either as monotherapy or in conjunction with prescription medications. Discussions between physicians and patients may result in a treatment compromise, with improved clinical outcomes. Patients reported satisfaction with physicians who recommended gentle skin care products in addition to prescription medications; patients valued physician opinions concerning nonprescriptions.
Even though OTC products are not proven effective for rosacea, self-perceived improvement with OTC products may lead to greater patient satisfaction, increased patient adherence, and improved tolerability of prescription products.1 OTC topical products were of great interest to rosacea patients; much discussion centered around sunscreen, as sun exposure triggers rosacea flare-ups. Mild OTC cleansers and moisturizers were also commonly used to ease dryness, burning, stinging, itching, and tightness; as part of a basic skin care regimen, these may benefit patients with erythematotelangiectatic rosacea and papulopustular rosacea.[1] OTC systemic therapy was utilized by patients to control allergic reactions and inflammation. Use of concealing makeup was important to male and female rosacea patients alike; non-irritating cosmetics provided some psychological comfort to patients, as they felt more physically attractive with a less blemished appearance. Patients are often concerned that their rosacea symptoms are misinterpreted as stemming from alcoholic tendencies and poor hygiene.[12]
Natural products were perceived by rosacea patients to be less irritating and as potentially efficacious therapy. Distinct from evidence-based medicine, homeopathic medicine is based on an alternative theory of diluting medication to prevent unwanted pharmacological symptoms.[13] Just like various OTC and CAM treatments, homeopathy was claimed to work by some patients and not others. In attempting to treat their chronic condition, some rosacea patients felt that homeopathy was another hopeful therapy to try. A limitation of this study is that some patients posted more frequently than others. The authors could not verify patients’ true skin care regimen. However, online anonymity is advantageous in allowing patients to express unhindered thoughts about nonprescription practices. Although it was impossible to correlate patient demographics with posts, forum membership spans multiple continents, adding diversity of opinion to the rosacea patient experience.
Rosacea patients desire cost-effective, easy-to-obtain treatment that provides timely results and caring, educational advice from their physicians on effective nonprescription and prescription products. Physicians have an opportunity to be a trusted source of information on the strengths and weaknesses of complementary treatments for rosacea.
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