Background

Eczema is one of the most commonly diagnosed skin disorders worldwide and as a consequence is frequently regarded as a trivial dermatological condition. In reality, eczema is often very challenging to treat due to its chronic relapsing course and complex pathogenesis. Although the majority of eczema cases present in childhood¹, symptoms are increasingly persisting into adulthood². Many studies estimate the prevalence of eczema to lie between 10-20 per cent^3,4. Unfortunately, the frequency of eczema is increasing^5,6. In Canada the prevalence of eczema is higher than the worldwide average⁷. Numerous theories regarding this phenomenon exist including factors such as migration⁸, decreasing family size⁹, pollution levels¹⁰ and the hygiene hypothesis¹¹. Despite previous ambivalence towards eczema, it is becoming apparent that eczema is often managed sub-optimally. Given the escalating incidence of eczema, it is important for physicians to better understand their patient’s perspective regarding eczema. This includes how Canadian patients are educating themselves regarding eczema; the extent to which they are suffering¹² from eczema, and the most effective treatments for eczema.

Methods

An online survey was conducted between August 3, 2005 and January 19, 2006 among English and French speaking Canadians. A total of 1071 surveys were completed. A partial sample was provided by members of the Eczema Awareness, Support and Education (EASE®) Program, a non-commercial patient information program (n= 620) and the rest were obtained from visitors to the Eczema Canada (www.eczemacanada.ca) website. Qualified respondents to the questionnaire were individuals who personally suffer from, or have a child or spouse who suffers from eczema. Results were analyzed with differences being significant at the 95 per cent confidence interval (± 3% on a base of 1,071).

Results

Of the 1,071 surveys received:

• Fifty-nine per cent (n=632) of respondents use topical steroid treatment for their eczema while 24 per cent (n=242) treat their eczema with Protopic® and 14 per cent (n=137) with Elidel®.
• The medication’s effectiveness is the most common reason that respondents continue using Protopic, Elidel or topical steroids.
• Fifty per cent of Protopic users have been using that therapy for at least 12 months; compared to 63 per cent of topical steroid users.
• Over 40 per cent of Protopic and Elidel users report the lack of side effects as a reason why they continue to use their respective medication compared to 20 per cent of topical steroid users.
• Men tend to cite Protopic’s lack of side effects as a reason to continue using Protopic, while no gender differences were observed for topical steroids and Elidel.
• Affordability is the least likely reason for a patient to choose Protopic or Elidel over topical steroids. In fact, Elidel and Protopic users were three times more likely to state cost as the reason for discontinuing medication usage than were topical steroid users.
• One third of respondents use their medication only during a flare-up.
• Men are more likely than women to use their eczema medication regularly.
• No differences in usage patterns were noted between those who use Protopic or Elidel and between those who use topical steroids.
• Despite steroids being the most common method of treatment, 75 per cent of respondents are concerned about using steroids to treat their eczema.
• Western Canadians are significantly more concerned about steroid use compared to the rest of Canada.
• The most frequently stated fear regarding steroid usage is thinning of the skin (84 per cent of respondents).
• Fifty five per cent of respondents feel that if they continually use steroids they may eventually stop working.
• Fourteen per cent expressed worry that steroid usage causes allergies.
• The main reason topical steroid users stopped using their medication was that they no longer wanted to use steroids.
• Nearly half of patients who no longer used topical steroids felt that the treatment no longer was effective or resulted in no improvement of their symptoms.
• Among those who tried Protopic in the past, one out of three stopped using that medication within three months. The most commonly stated reason was that patients did not see an improvement.
• Forty-eight per cent of Elidel users stopped using Elidel within the first three months of initiating therapy. The primary reason Elidel users stopped their medication was that 41 per cent did not see an improvement in their condition.
• Seventy-six per cent per cent of respondents expect to see results within two weeks of starting a treatment.
• Women tend to have higher expectations than do men, with more of them anticipating results within two weeks.
• Respondents in their 30s are more likely than those both younger and older to expect results in a short time frame.
• Respondents over the age of 50 tend to persist with a medication for a longer period of time than those who are under 50 if results are not visible within their expected time frame.
• The majority of respondents will keep trying a medication for at least a week even if they do not see results. Only 27 per cent indicated they will keep trying a medication that is not producing a result after a month.
• Thirty-nine per cent of patients first hear about eczema from their family physician, 13 per cent from their dermatologist and 10 per cent from their paediatrician.
• Of the 62 per cent that first learn of eczema from a physician, 47 per cent rate the information they receive as poor or fair.
• Although 92 per cent of respondents obtain a prescription once diagnosed with eczema, only 56 per cent receive verbal counselling about their condition from the physician who made the diagnosis.
• Of the 56 per cent of patients who receive counselling regarding eczema, just 21 per cent felt the information they obtained was excellent.
• Less than half (45 per cent) of patients who receive a prescription are given instruction on proper medication usage.
• Sixty-six per cent of patients rely foremost on self-conducted research on the internet for educating themselves about eczema. Three out of four respondents have visited www.eczemacanada.ca at least once.
• More than half of respondents are unaware of ‘topical immunomodulators’ (TIM) or ‘topical calcineurin inhibitors’ (TCIs).
• Of those who indicate using Protopic or Elidel, only 64 per cent say they are aware of the TIM/TCI class of medication.
• Of respondents who are aware of TIM/TCI treatments, 50 per cent first heard about these medications from their dermatologist, 25 per cent from their family physicians and 20 per cent from the internet.
• Patient surveys have highlighted the impact that eczema has on quality of life. Ninety per cent of respondents report significant frustration with their eczema.
• Protopic and Elidel users are more frustrated by the high cost of medication than are steroid users. Twenty-seven per cent of respondents felt their frustration with eczema was related to the high costs associated with the condition. Respondents spend on average nearly $500 per year to treat their eczema.
• The most commonly reported frustration was the lack of treatment options that really improve the condition.
• Twenty-five per cent felt frequent physician visits increased their frustration with eczema.
• Many patients report that eczema interferes with their sleep, relationships with others and influences their family life.
• Respondents in their 20s report ‘life effects’ such as embarrassment, intimacy problems and cosmetic concerns more frequently than all other age groups.
• People suffering from eczema miss on average seven days a year of work or school due to eczema.
• Parents with a child that suffers from eczema report an average of nine days missed of work or school per year.
• Half of respondents say their eczema covers less than 10 per cent of their skin; one third say it covers up to half of their body.
• More than half of respondents experience eight or more flare-ups each year.
• Flare-ups occur at various times throughout the year with winter being the most common season.

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¹ Rajka G. Atopic Dermatitis. London: WB Saunders, 1975

² Herd RM, Tidman MJ, Prescott RJ, et al. Prevalence of atopic eczema in the community: the Lothian atopic dermatitis study. Br J Dermatol 1996; 135:12-17.

³ Kay J, Gawkrodger DJ, Mortimer MJ, et al. The prevalence of childhood atopic eczema in a general population. J Am Acad Dermatol 1994; 30: 35-39.

⁴ Aberg N, Engstrom I, Lindberg U. Allergic diseases in Swedish children. Acta Paediatrica Scandinavica 1989; 78:246-52.

⁵ Schultz Larsen F. The epidemiology of atopic dermatitis. Monogr Allergy 1993;31:9-28.

⁶ Boguniewicz M, Leung D. Atopic Dermatitis. In: Middleton E, et al Allergy, Principles and Practice, 5th Ed., Mosby, St. Louis, p. 1123. 1998

⁷ Eczema Prevalence in Canada. Ipsos-Insight Health, 2003

⁸ Williams HC, Pembroke AC, Forsdayke H, et al. London-born black Caribbean children are at increased risk of atopic dermatitis. J Am Acad Dermatol 1995; 32:212-7.

⁹ Srachan D. Hay Fever, hygiene, and household size. BMJ 1989; 299:1259-1260.

¹⁰ Dotterud LK, Falk ES. Atopic disease among adults in northern Russia, an area with heavy air pollution. Acta Dermato Venereologica 1999; 79:448-50.

¹¹ Rautave S, Ruuskanen O, Ouwehand A et al. The hygiene hypothesis of atopic disease an extended version. J Pediatr Gastroenterol Nutr 2004; 38(4): 378-88

¹² Lewis-Jones MS, Finaly AY, Dykes PJ. The Infants’ Dermatitis Quality of Life Index. Br J Dermatol 2001; 144: 104-10.

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