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Vivacommunications.com.auPediatric Dermatology Vol. 22 No. 3 192– 199, 2005 The Burden of Atopic Dermatitis: Impact on
the Patient, Family, and Society
Christie L. Carroll, M.D.,* Rajesh Balkrishnan, Ph.D.,*‡ Steven R. Feldman, M.D., Ph.D.,*†
Alan B. Fleischer Jr., M.D.,* and Janeen C. Manuel, Ph.D.*†
Departments of *Dermatology and †Public Health Sciences, Wake Forest University School of Medicine, Winston-Salem, North Carolina, and ‡Ohio State University College of Pharmacy and School of Public Health, Abstract: Atopic dermatitis is a common disease of increasing preva-
lence. Affected individuals must cope with a significant psychosocial burden,
in addition to dealing with the medical aspects of the disease. Furthermore,
because this is primarily a disease of childhood, family members, especially
parents, are also affected by the condition. Individuals and family members
are burdened with time-consuming treatment regimens for the disease, as
well as dietary and household changes. The financial impact of atopic der-
matitis on families can also be great. Moreover, the cost to society is signifi-
cant, with estimates ranging from less than $100 to more than $2000 per
patient per year. It is estimated that the direct cost of atopic dermatitis in the
United States alone is almost $1 billion per year. Reducing the onus of this
disease must take into account the full breadth of its burden. Targeting
parents and caregivers with education and psychosocial support can
decrease family and personal burden, which in turn may decrease the
cost of treating the condition because of better medical, psychosocial, and
there is prominent scaling with distinct lichenification.
DIAGNOSIS OF ATOPIC DERMATITIS
In all three stages, excoriations are often present (1). In Atopic dermatitis (AD) is a common skin disease that addition, there is a chance of increased colonization with places a large burden on patients, their families, and Staphylococcus aureus in the AD population, and super- society. It is characterized as a chronic inflammatory disease that most commonly begins in childhood. The Firm criteria to define the disease were first created three stages of AD generally acknowledged are (i) the by Hanifin and Rajka in 1980 (3), and included almost acute stage, where the skin is red and scaly and / or has 30 signs, symptoms, and laboratory abnormalities. More small vesicles that rupture and weep from scratching; (ii) recently, the United Kingdom Working Party developed the subacute stage, where the skin has mild scaling and a more straightforward criteria consisting of one major mild lichenification; and (iii) the chronic stage, where criterion: the presence of an itchy skin condition in Address correspondence to Janeen Manuel, Ph.D., Departments of Dermatology and Public Health Sciences, Wake Forest University School of Medicine, Medical Center Boulevard, Winston-Salem, NC 27157, USA, or e-mail: [email protected]
Address correspondence to Janeen Manuel, Ph.D., Departments of Dermatology and Public Health Sciences, Wake Forest UniversitySchool of Medicine, Medical Center Boulevard, Winston-Salem, NC27157, USA, or e-mail: [email protected]
the last 12 months, and five other factors, at least three diagnosed at the 30-point level in this questionnaire.
of which must be present for a diagnosis (4 – 6). These Therefore, the prevalence may have actually been minor criteria include onset before 2 years of age, a his- tory of flexural involvement, a history of dry skin, a per- Laughter et al (8) found a prevalence of 17% in a sonal history of other atopic diseases (or, for children questionnaire-based study of Oregon schoolchildren.
under 4 years, a history of atopic disease in a first degree This questionnaire was based on Schultz et al’s (10) relative), and current visible flexural dermatitis. The previous study (with some modifications), and was vali- newer criteria have simplified the diagnosis of AD.
dated in the clinic by a dermatologist by diagnosis. The However, in clinical practice, diagnosis is more likely diagnostic point value was raised to 80 to increase the made based on a physician’s global impression than on specificity of diagnosis, creating an even more conserva- tive prevalence estimate of 7%. The conflicting resultsof these studies highlight the difficulty of determiningprevalence of a disease with population-based question- PREVALENCE OF ATOPIC DERMATITIS
Atopic dermatitis affects between 5% and 20% of all While AD can persist into adulthood (and, on occa- children (see Table 1) (7,8). These figures are based sion, have adult onset), adult disease is much less com- on multiple studies with different methodologies and mon than childhood disease. Although estimates vary, a populations. Furthermore, the results of studies in different 60% clearing of AD at adulthood is a reasonable esti- racial, ethnic, or age groups may not be generalized. In mate (11). Determining a precise prevalence of AD in Singapore, a large study (n = 12,323; ages 7 to 16) using adults is difficult, as many people have different forms questionnaires and examination by a trained nurse found of dermatitis (e.g., nummular and xerotic dermatitis) that a prevalence of 21% in a primarily Asian population (9).
may be within the spectrum of atopic disease. However, The prevalence in Northern European children was Muto et al (12) presented a questionnaire-based study found to be 15.6% in a cross-sectional questionnaire (using the United Kingdom Working Party criteria) of study by Shultz et al (10). The questionnaire used in that over 10,000 Japanese adults seen for health checkups study was investigator generated; 105 patients with the in Japan and found a lifetime prevalence of 3%. Their diagnosis of AD and 100 outpatients with other subjects were predominately male (75%), and the study diagnoses were examined for AD using the Hanifin / was conducted in an urban area, both of which may bias Rajka criteria. A score of greater than 50 points was set, results. Additionally, this study relied on distant memo- giving 88% sensitivity and 89% specificity for the ries of childhood diseases, creating a significant recall presence of AD. However, using the United Kingdom bias. Sugiura et al (13) found a prevalence of 11% in Working Party diagnostic criteria, a subject could be Japanese teenagers aged 16 to 18 in a study that TABLE 1. Overview of Atopic Dermatitis Prevalence Studies
194 Pediatric Dermatology Vol. 22 No. 3 May/June 2005 included an examination and diagnosis based on the more expensive than topical therapies, but in some cases Hanifin and Rajka criteria. Prevalence of atopic dermatitis are the only means of gaining remission.
decreased with age; however, the rate was significantlyhigher than the 3% presented by Muto et al (12).
IMPACT OF ATOPIC DERMATITIS ON
Recent epidemiological studies report a trend toward THE PATIENT
an increasing prevalence of AD in children (14,15). Pos-sible reasons for this have been hypothesized to include: Health care professionals frequently discount AD, increased industrialization and pollution and changes in despite its high prevalence, regarding it as a minor skin the home environment (including improved insulation, problem that will resolve with time (24). Those who synthetic fabrics and bed linen, and wall-to-wall carpet- realize the seriousness and chronicity of AD are often ing) (16,17). These environmental changes may contribute unaware of the full extent to which the disease affects qualitatively or quantitatively to antigen exposures, which patients. Individuals with AD are affected both by the can trigger the disease. In addition, societal changes, condition itself and by the stigma associated with its such as generally better socioeconomic conditions and smaller family sizes, mean that children are being Accordingly, people with AD tend to report lower exposed to fewer infections in early life, which may health-related quality of life and greater psychological result in an increased expression of AD (18).
distress than the general population, and those withsome other medical conditions (26 – 30). For example,Kiebert et al (26) examined the quality of life of 318 TREATMENT OF ATOPIC DERMATITIS
patients with AD aged 4 to 70 years using the SF-36, AD treatment is targeted at both the disease and its a general health-related quality of life measure. Patients symptoms. Patients are generally advised to keep their over 16 years of age had significantly lower scores on skin moisturized with the liberal use of emollients the vitality, social functioning, and mental health and home vaporizers. In addition, many patients are subscales than the general population. In addition, study prescribed antihistamines because of their antipruritic participants had statistically significant lower mental effects in an effort to decrease the itch–scratch cycle.
health scores than patients with diabetes or hyperten- Finally, oral antibiotics are prescribed in addition to sion, and significantly lower social functioning scores standard topical AD treatments if the skin becomes than those with hypertension. Further, when Kiebert et al (26) compared individuals with AD to those with psori- Originally, treatments for AD were primarily topical asis, another common skin disorder long acknowledged corticosteroid agents, which are often accompanied by to affect quality of life, patients with AD had signifi- side effects with the long-term use required to control a cantly lower role-physical, vitality, social functioning, chronic disease. This situation has changed dramatically role-emotional, and mental health subscale scores. Of with the advent of topical calcineurin inhibitors such as note, this study was conducted in a clinic population, tacrolimus and pimecrolimus. Although more expensive which may have skewed the results by over-representing than topical corticosteroids, these medications can be those with more severe disease and worsened quality used with great success in AD and have minimal side effects with continuous use for up to 3 years (19,20). In Linnet et al (28) also found that adults with AD addition, the AD relapse rate with tacrolimus has been reported lower quality of life [using the Dermatology reported as lower than with the use of high potency Life Quality Index (DLQI) ] than controls. This small study also found higher levels of anxiety among persons In cases of severe AD, additional treatment may be with AD than healthy controls. Anxiety in people with needed to control the disease. Systemic immunosuppres- AD is of particular concern, as stress has been found to sion by cyclosporinee, methotrexate, or azathioprine may trigger the itch–scratch cycle, potentially setting off AD be used with success (22). These medications are not without side effects, however, and must be used cau- Adults and children with AD are also at risk for tiously, especially in children. Another option for the psychosocial difficulties. Anderson’s study of 559 adults treatment of severe disease is phototherapy (23). This with self-reported AD noted that 47% of subjects might include simply encouraging patients to increase reported feeling frustrated with their disease often or their sun exposure (contrary to dermatologist recom- always, 39% were often or always embarrassed by their mendations for most people). However, phototherapy appearance, and 35% were often or always angry about may also entail formal UV-B or psoralen plus ultraviolet their appearance (30). Previous studies have also found A (PUVA) treatment sessions. These treatments can be that adults with AD often report being overprotected and undisciplined as children, and experience an increased show their affection in terms of a hygienic ritual, which incidence of psychiatric disorders as adults (32,33).
in turn changes the relationship dynamics between the Moreover, numerous researchers have found a rela- mother and the child to more of a nurse– child relation- tionship between childhood AD and psychosocial ship (40). In addition, the burden of caring for the child difficulties in children. Children with AD often have with AD can negatively affect spousal relationships and behavioral problems such as increased dependency, interfere with giving adequate attention to siblings (27).
fearfulness, and sleep difficulties (34). These behavioral An Australian study reported that taking care of a child problems can affect social development, as well as inter- with moderate or severe AD was more stressful than fere with intellectual development. Peer and teacher caring for a child with insulin-dependent diabetes (41).
relations may be affected by AD because of fear of A recent qualitative investigation into the family infection, the child’s physical appearance, or limitations impact of childhood AD found several areas where AD impacts the family. An analysis of data from focus The effect of AD on sleep, primarily related to night- groups with parents of children with AD aged 12 years and time itching and scratching, is often significant. Yosipo- below was conducted (Manuel et al 2003, unpublished vitch et al (36) reported that the sensation of itch was data). Nine major areas of AD family impact were deter- more frequently reported at night; 84% of the 100 AD mined, including sleep issues, time management, lifestyle patients completing the study reported difficulty falling changes, treatment issues, social impact, school and asleep, with 79% reported being awakened by pruritus.
daycare, family activities, financial stresses, and personal Furthermore, a recent study of 28 subjects (14 with AD, strain. Other studies have presented data, and several 14 controls) using wrist actigraphy to measure sleep investigators are beginning to build conceptual models of disturbance found that individuals with AD slept more family impact based upon these data (Manuel et al, in poorly, with more waking episodes and increased activ- ity than healthy controls (37). Reid et al (38) suggested A major stress-causing factor that most families deal that children with AD lose an average of 2 hours of sleep with is sleeplessness as a result of itching in a child with per night secondary to the condition. Sleep loss during AD (27,35,41,44). Sleep deprivation can affect all the night can lead to increased daytime drowsiness, and family members, including siblings. Long et al (44) may result in school problems, as can oral antihista- found that 60% of a sample of parents of children with mines prescribed to control the condition and physical AD rated loss of sleep as a significant problem. Other researchers have noted that parents can lose up to 1 to In summary, AD is often associated with significant 2 hours of sleep per night while dealing with AD symptoms; morbidity in the patient. Pruritus can affect both sleep loss that can translate into poor work functioning and and mood, and affected individuals often must modify decreased coping skills at work and at home (38).
several aspects of their lives because of treatment regi- Additional factors that add to the burden of caring for mens and associated lifestyle changes. Individuals with a child with AD are the financial costs of treatment, time AD are also at risk for psychosocial difficulties that may missed from work for physician appointments, and have long-lasting consequences, potentially affecting lack of understanding and social support from friends career choices and personal relationships.
and family members (44 – 46). Many AD families areadvised to make lifestyle changes, including restrictingor modifying diets; using special soaps and detergents; FAMILY IMPACT OF ATOPIC DERMATITIS
wearing clothing or using linens of all natural fibers; Because AD most commonly affects children, parents only; adding dust mite protectors; and removing carpets and other family members are often involved in (47). These lifestyle changes take time to complete and caregiving. This can greatly impact family dynamics as are often a strain to the family’s budget. In addition, well as family life in general. Research has revealed that treatment for AD can be a very time-consuming process families of children with AD often report lower quality for the parents or caregivers, and affects the amount of of life than families of healthy children (27,35). Not time they have for other family members and them- surprisingly, the family impact of the disease has been selves. Estimates by Su et al (41) suggested that 2 to positively correlated with AD severity, with more severe 3 hours per day are spent caring for a child with AD, cases associated with increased family disruption (39).
Parents have reported both high stress levels associ- The effects of AD on the family can be extensive ated with treating and taking care of the child with AD, and pervasive. Unfortunately, because AD is not life- and feelings of helplessness regarding the child’s symp- threatening, families often do not receive potentially toms. Mothers of children with AD are more likely to useful educational or psychosocial support, which can 196 Pediatric Dermatology Vol. 22 No. 3 May/June 2005 result in further stress and frustration. A perceived lack per child per year was based on national health care sys- of support from medical professionals can lead to tem data (prescription and visits), as well as surveys of decreased trust in the medical system, which in turn may families for over-the-counter medications, transportation result in decreased adherence to treatment and subopti- to medical visits, cost estimates for lifestyle changes, mal medical, psychosocial, and economic outcomes.
alternative treatments or out-of-pocket specialist visits,and income loss. This estimate included children withAD of all severities.
COST OF ATOPIC DERMATITIS
In a systematic review of third party claims data, Ellis When estimating the cost of any disease, there are many et al (51) presented the estimated direct cost of AD and factors that must be considered. Direct costs estimates eczemas in the United States as $900 million. In this usually are based on medicare or HMO reimbursement analysis, claims from a managed care payer and state data and claims information. Indirect costs include Medicaid program were used, with AD diagnoses based time lost from work, over-the-counter treatments, and on International Classification of Diseases (ICD-9-CM) therapies that are not covered by insurance, such as codes. Claims were reviewed by a panel, and comorbid- allergy testing and alternative medicine. These costs ities were classified as most likely related to AD and must be considered along with the incidence and possibly related to AD. The cost quoted included all prevalence of disease in the population being studied.
AD claims for visits, prescription drugs, and “likely” Further, the range of severity of the disease must be AD-related comorbidities. The estimate, however, did not weighed in, as patients with severe disease will often include any indirect costs related to over-the-counter Estimates of the direct costs of AD vary because of Fivenson et al (52) presented an estimate of direct the health care management systems employed by the and indirect costs of AD to be $609 per patient annually, different countries researched, the variability of cost using a patient survey to estimate indirect costs (includ- components included in the study, and the severity of ing time lost from work) and managed care claims data the disease population examined. Verboom et al’s (48) to estimate the direct costs. Of importance, the direct review, however, found that the health care costs of AD medical costs were found to be only 27% of the total, ranged from $71 to $2559 per patient per year.
suggesting the significant underestimation that occurs if Lapidus et al (49) studied emergency room visits and only direct costs were used to estimate the AD financial ambulatory care billing records of an urban hospital and burden. Additionally, as discussed in an editorial by extrapolated the direct costs to the United States to be Ellis (53), there may be fewer severely affected patients $364 million annually. However, this study, published in in Fivenson’s study sample, which would lead to lower 1993, was thought to underestimate the true cost of AD because it calculated only ER and physician visits.
While these estimates of the cost of AD to society Su et al (41) presented results from an Australian vary, in sum they indicate that the economic burden of study that divided the direct costs of AD into severity this disease is considerable. Moreover, the lack of inclu- groups. Costs calculated included medication, dressings, sion of indirect costs in most of these estimates indicates and medical visits, but excluded indirect expenses that the cost of AD is even greater than reported. A com- related to lifestyle changes such as dust mite covers, parison of AD to other common skin diseases such as nonirritating clothing, or nontraditional AD treatments.
psoriasis, in which the direct costs were recently esti- The calculated costs were $216 per patient per year for mated by Javitz et al (54) as $650 million, demonstrates mild disease, $535 per year per patient for moderate dis- the magnitude of the financial burden of this condition.
ease, and $821 per year per patient for severe disease.1 Cost-effective treatments for AD are needed to decrease This estimate is again conservative because of the noted its financial impact on the patient and society.
Emerson et al (50) presented an all-inclusive (direct REDUCING THE BURDEN OF ATOPIC
and indirect) cost estimate for preschool children in DERMATITIS
2001 in the United Kingdom. Their estimate of $1302 This disease causes a significant burden in terms of costto society, and in addition, has a great impact on thefamily, including psychological, social, and financial.
1 Rough estimate – converted from Australian dollars to US dollars The potential for psychosocial difficulties makes it clear that individuals dealing with AD and their families need Rough estimate – converted from UK pounds to US dollars on 6/ more than just the physical treatment of symptoms.
Because constant scratching can maintain or aggravate ment skills, the course of the disease, and the family’s skin inflammation, educational and psychosocial support quality of life. A multidisciplinary team of physicians, for patients and their families in addition to medical psychologists, and nutritionists instructed parents on treatment of AD may improve the long-term physical issues related to AD in six 2-hour group sessions. Ninety- three parents participated in the groups, and 111 parents Support programs for adults with AD have shown served as wait-list controls. This study found a positive promise in reducing AD symptoms. For instance, a 1995 effect on the families’ quality of life and coping. In addi- randomized controlled trial compared the effectiveness tion, parents attending the program had increased satis- of a dermatologic educational program, autogenic faction with medical treatment and better treatment (relaxation) training, cognitive behavioral training, and a management skills (such as the proper use of emollients, combination of dermatologic education and cognitive antiseptics, and topical corticosteroids). These families behavioral training versus standard care for patients with also had a significant reduction in treatment costs.
AD (55). Assessments 1 year after the completion of the Further studies to develop these educational programs program demonstrated that the psychological training and to prove efficacy in decreasing the burden of AD are groups had significantly greater improvements in AD necessary. This type of program may be as important as, severity than the dermatological education group alone and potentially more cost effective than, developing new or the standard care group. However, adults with AD have medical treatments for the disease. Decreasing the sever- presumably been dealing with symptoms for years, and ity can decrease the costs related to medications, physi- often have significant knowledge about their condition.
cian visits, and personal expenses because of time lost Psychological support alone may therefore be enough from work and over-the-counter treatments.
to decrease severity levels in adults. Parents of children In addition, specialist care for individuals with AD with AD, however, often need both information on AD may also be useful in decreasing the family impact of and psychological support. Encouraging patients and the condition. A recent study determined that an episode parents to join a support and patient advocacy group like of specialist care (i.e., the dermatologist) was associated the National Eczema Association may serve this purpose.
with decreased family impact (45). This study also While educational programs for families of children determined that the visit to the specialist led to decreased with AD have been scarce, existing programs have pro- out-of-pocket nonmedical care expenses.
vided preliminary evidence that both parent education Furthermore, the simple acknowledgment of the and psychosocial support are helpful in reducing AD- potential effects on the family by health care workers related stress, increasing confidence in managing AD, can improve the physician–patient relationship and and decreasing AD severity (56 –59). For example, in a therefore the trust in the physician. With improved pilot study of parents of children with AD, McSkimming physician–patient (parent) relationships, adherence to treat- et al (59) found less anxiety, helplessness, and loneliness ment protocols can be improved as well (60). Increased in 11 parents who attended a support group.
adherence will in turn improve treatment outcomes, In one of the few controlled studies of the effects of which has implications for patient and societal costs parent AD education, Broberg et al (56) compared a group of parents of children with AD who received a It has been suggested by many that quality of life 2-hour educational session led by a nurse (n = 22) with (QOL) assessment tools be administered to patients as a control group of parents who received routine informa- an outcome measure for treatment success. These mea- tion from a physician during the office visit (n = 20). The sures, including the Dermatology Life Quality Index educational group received general information about (DLQI), the Children’s Dermatology Life Quality Index AD and about different treatments and factors known (CDLQI), the Dermatology-specific Quality of Life to exacerbate the condition. After 2 months, children of (DSQL) instrument, and the Parent’s Index of Quality of parents receiving the educational intervention had Life in Atopic Dermatitis (PIQoL-AD), have often been decreased AD severity as measured by type, intensity, used to assess outcomes in clinical trials, but are rarely and distribution of the skin lesions. These studies pro- used in clinical practice (61– 65). Increased attention to vide some preliminary evidence that educational or the individual’s quality of life by health care profession- psychosocial programs are useful for parents of children als would represent a significant step toward a more The most comprehensive educational program for Finally, information on the cost effectiveness of parents of children with AD to date was recently different treatment regimens for AD is greatly needed developed in Germany. The Berlin Education Program to decrease the economic impact of the disease on the (57,58) was conducted to improve parents’ AD manage- patient, the family, and society (18). In one of the few 198 Pediatric Dermatology Vol. 22 No. 3 May/June 2005 existing cost-effectiveness analyses of AD treatments, atopic dermatitis in North Europe: an international Ellis et al (53) found that topical tacrolimus ointment questionnaire study. J Am Acad Dermatol 1996;34:760 – was similar in cost to treatment with high potency 11. Graham-Brown RA. Atopic dermatitis: predictions, expec- topical corticosteroids. Cost ratios for various steroid tations, and outcomes. J Am Acad Dermatol 2001;45:S61 – formulations ranged from $5.85 per disease controlled day (DCD) to $7.59 per DCD, and $6.97 per DCD for 12. Muto T, Hsieh SD, Sakurai Y, et al. Prevalence of tacrolimus (21). The cost-effectiveness of other new atopic dermatitis in Japanese adults. Br J Dermatol AD treatments, including educational programs for 13. Sugiura H, Umemoto N, Deguchi H, et al. Prevalence of individuals and families dealing with the condition, childhood and adolescent atopic dermatitis in a Japanese are urgently needed to ensure that the treatment of the population: comparison with the disease frequency exam- disease is managed optimally in a cost-effective manner.
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