Pediatric 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 family outcomes.
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
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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-
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