Research continues to show that the chronic facial disease rosacea which affects more than 16 million Americans may lead to feelings of stigmatization that can negatively impact psychological and social well-being.
"Some individuals are more at risk and subsequently more affected by rosacea. There is probably a combination where there is a perfect storm of factors, including genetic predisposition to be more sensitive, childhood experiences that involve embarrassment, humiliation or stigmatization, and current life circumstances,” said Richard Fried, MD, PhD, a psychologist and dermatologist, who is clinical director at Yardley Dermatology Associates in Yardley, PA.
“The severity and volatility of rosacea may correlate as well although we certainly are aware that individuals may be dramatically affected even with mild clinical disease. Rosacea patients with more vasomotor activity (blush/flush tendency) maybe more at risk for psychological impact because the volatility and visibility of their skin disease is so readily visible. If they are literally wearing and displaying their emotions to all interested and even disinterested parties, obviously, a vicious cycle of negative perpetuation can evolve as discomfort in professional, personal, family, and intimate situations leads to more feelings of stigmatization and low self-esteem,” he said.
In a recent study published online in Journal of the European Academy of Dermatology and Venereology, researchers evaluated different aspects of rosacea that could contribute to feelings of stigmatization. For the study, an online survey of a representative sample of the adult population in the United Kingdom, France, Germany, and United States was conducted to identify patients with rosacea based on presence of 3 or more clinical features. Among the patients who completed the survey (n=807), mean age at first sign/symptom of rosacea was 31.3 ± 14.5 years; mean duration of disease was 102 ± 119 months.
One-third of patients reported feelings of stigmatization (FS; n=275). Male patients were more likely to experience FS (49% vs 37.2% in non-FS population; P=.0037). Those with FS were more likely to avoid social situations (54.2% vs 2.0%; P<1.00E-10) and had a higher rate of depression (36.7% vs 21.1%; P< 1.00E-10). Stigmatization is important in the daily lives of those with rosacea and should be taken into consideration in the management of these patients, they concluded.
Previously, a literature review found that patients with rosacea have higher incidences of embarrassment, social anxiety, depression, and decreased quality-of-life (QoL) compared with the rest of the population. Adequate treatment of symptoms results in improvement of QoL in patients with rosacea.
The study included a search of Medline, Embase, and psycINFO databases from 1946 to present to identify previous articles regarding the psychosocial and QoL impact of rosacea. A total of 17 studies were found that focused on the following areas: impact of disease on QoL, improvement of QoL with treatment, and willingness to pay. Reviewed articles used different measurement systems to quantify impact on QoL making comparisons between studies difficult to interpret.
A study by Huynh3 concluded that the self-perception of disease severity varies among patients with rosacea. As such, the study author recommended that physicians should carefully consider each patient’s concerns when prescribing a treatment regimen. Often the impact of rosacea on the patient’s emotional health and QoL has been underestimated or overlooked. Although rosacea is a lifelong condition that adversely affects the emotional health and QoL of patients, only a small percentage of patients with rosacea seek professional advice and treatment.
Recent studies are demonstrating potential associations between rosacea and increased risks of cardiovascular disease, high cholesterol (dyslipidemia), gastrointestinal disease, certain types of cancer, and Alzheimer disease.5-9 In addition, people with rosacea frequently report emotional issues, according to the National Rosacea Society (NRS).
Most rosacea patients surveyed indicated that they have felt the negative emotional and social effects of their condition regardless of severity, according to recent NRS surveys. In a survey of 1675 rosacea patients, 90% said the disorder’s effect on their personal appearance had lowered their self-esteem and self-confidence, and 88% said they had suffered embarrassment. They also reported a wide range of negative feelings, including frustration (76%), anxiety (54%) and hopelessness (54%), depression (43%), anger (34%), and isolation (32%). Fifty-two percent of the respondents said they had avoided face-to-face contact because of the disorder. Among those with severe symptoms, 51% said they had even missed work because of their condition.
A study by Egeberg and colleagues investigated the relationship between rosacea and new-onset depression and anxiety disorders. Data on all Danish citizens aged ≥ 18 years between January 1, 1997, and December 31, 2011, were linked at individual level in nationwide registers. Incidence rates per 1000 person-years were calculated, and crude and adjusted incidence rate ratios (IRRs) with 95% confidence intervals (CIs) were estimated by Poisson regression models.
The study had 4,632,341 individuals, including 30,725 and 24,712 patients with mild and moderate to severe rosacea, respectively. Mild and moderate to severe rosacea increased the risk of both depression (IRR, 1.89; 95% CI, 1.82-1.96 and IRR, 2.04; 95% CI, 1.96-2.12, respectively) and anxiety disorders (IRR, 1.80; 95% CI, 1.75-1.86 and IRR, 1.98; 95% CI, 1.91-2.05, respectively). The researchers concluded that rosacea was associated with a disease severity-dependent, increased risk of depression, and anxiety disorders. The researchers added that the findings called for increased awareness of psychiatric morbidity in patients with rosacea.
According to NRS, new research is helping to dispel common misconceptions about the disorder by illuminating rosacea’s relationship to various internal and external factors that may be involved in its development. Through the Society’s patient-funded research grants program, the NRS has awarded more than $1.4 million to support 61 studies that may lead to advances in its treatment and potential prevention or cure.
Addressing Emotional Needs
While the etiology of the disease is still unknown, ongoing research has suggested that rosacea may be caused by various factors, including irregularities of the immune system, nervous system, facial blood vessels, and genetics, as well as the presence of microbes and Demodex mites on the skin.
Dermatologists can help advise patients on dealing with the emotional impact of the disease, according to Dr Fried. “Initially, the dermatologist or dermatology health care professional should make clear to the patient that they understand how difficult it can be to live with a capricious, unpredictable, and visible skin condition such as rosacea,” he explained. Dr Fried recommended using simple and succinct statements, such as “I understand how upsetting it can be to deal with the frustrations and embarrassment of rosacea” or “I understand the unpredictability of when and how the skin will misbehave is very difficult to live with.”
In addition, he noted that a very brief explanation of the pathophysiology, (that is, immunologic irritability) can be helpful in allowing patients to understand why their skin behaves as it does. “Perhaps most important is offering the patient a direct promise that we will offer them better control over their skin and use proven and effective treatments that will make their skin less red, less sensitive, and less volatile. We can also suggest that we will make them feel less obliged to wear extensive camouflage makeup and enjoy the freedom of being able to leave the house with minimal cosmetic camouflage,” he said.
In addition, it is helpful to make clear that illumination of all redness is not necessarily a desirable goal. “Stark white complexion can look ghostly and unwell. A modest amount of redness looks healthy and robust. This can be helpful because there is a tendency for all of us to magnify and react with strong negative emotional reactions to any ‘evidence’ of an underlying problem. Patient should be directly told that we can help them feel better in their skin,” Dr Fried said.
Other suggestions include:
1. Suggest lifestyle and environmental changes based on factors that have been found to trigger flare-ups of signs and symptoms in various individuals. Common rosacea triggers include sun exposure, emotional stress, hot or cold weather, wind, heavy exercise, alcohol, spicy foods, heated beverages, humidity, certain skincare products, and potentially an overabundance of Demodex mites. One NRS survey of 1221 people with rosacea found 96% of those who believed they had identified personal trigger factors said avoiding those factors had reduced their flare-ups.
2. Recommend patients with rosacea consider joining an online support group, which can help patients with rosacea connect with others. While face-to-face support groups are not well established, individuals with rosacea can find online chat groups and forums through www.yahoogroups.com and www.rosacea-support.org, according to NRS.
3. If patients appear to be struggling with self-esteem and QoL issues, consider a behavioral health consultation. “On occasion, it may be helpful or necessary to refer them to a mental health professional for therapy and perhaps medication to help them feel better and respond better to treatment,” Dr Fried said.