Patient Education and Psychosocial Support in the Management of Atopic Dermatitis (AD)
Tuesday, August 01, 2006
Atopic dermatitis (AD), with a lifetime incidence of
17%,1 is one of the most common skin disorders affecting
children. Most children with this condition are diagnosed before
the age of 2 years.2 As with other chronic childhood
diseases, caring for a child with AD can affect the entire family
and the burden increases with the severity of the AD.3
In fact, AD has been shown to be a greater burden on families than
childhood asthma4 or type 1 diabetes.5
As physicians, we need to understand that the child is not the
only one dealing with this disease - the entire family is affected.
To truly care for these children, prescriptions are not enough.
Just like diabetes, AD management is not complete without some
degree of education and support for the family.
The psychosocial impact of AD begins with the fact that AD is a
chronic illness that requires constant vigilance and skin care.
Parents spend an average of 1-3 hours daily caring for their
child's skin.5,6 AD therapy, including physician visits
and medications, is also a financial drain. In one study, 12% of
parents reported spending $200 each month on non-prescription
products alone.7 This does not include the indirect
costs of time away from work. Children with AD who have crusting or
excoriations are often excluded from daycare or school due to
concern of contagion. There is also the concern that other
caregivers will not be able to comply with the child's
therapy.8 Parents may be forced to stay home with their
child or may be unable to work at all.5,8 The exclusion
from school and work can lead to feelings of loneliness and
isolation both for the child and the parent.8
Furthermore, children with AD often have flares in hot weather or
during certain activities, limiting the family's ability to
participate in outdoor activities or take certain
In addition to the financial and social impact of AD, there are
also emotional effects. Children with AD tend to be itchy, fussy,
and irritable.8 This can create stress for the caregiver
who wants relief for their ill child. They may become frustrated by
ineffective therapies,8 but at the same time, they are
worried about the side effects of long-term medication use and its
effects on their child's development.2,8,9 When children
scratch in public or have unsightly skin, parents must contend with
comments and unsolicited advice from family members and complete
strangers who question the parent's ability to care for the
child.8,9 This, combined with sleep deprivation, can add
to the parent's feelings of sadness, frustration, and
Sleep disturbance is a common complication of AD. Up to 80% of
children with AD have difficulty falling and staying asleep due to
itching and scratching.2 This may result in daytime
drowsiness, fussiness, or decreased school performance, and may be
compounded by the use of sedating antihistamines.9 To
facilitate the child's sleep and help prevent scratching, 30% of
parents co-sleep with their child, often at the expense of their
own ability to sleep.8,10 Parents' sleep is disrupted
approximately 4 times each night and they lose at least 1 hour of
sleep each night caring for the child with AD; the more severe the
AD, the greater the sleep disturbance.4,5 This results
in increased parental sleep deprivation, anxiety, and depression,
particularly for mothers.4 Co-sleeping also results in
perpetuation of the sleep disturbance for the
As practitioners, we have the opportunity to intervene through
education and support and make a significant difference in the
lives of our patients and their families.9 A single
visit with a specialist (dermatologist) results in decreased burden
on the family, increased satisfaction with their medical care
overall, decreased out-of-pocket expenses for AD, and parental
reporting that their child's AD was less severe.11
Similar improvement has been noted after educational sessions by a
dermatology nurse, with eczema severity decreasing by 89% and use
of emollients increasing by 800%.12 Notably, if the
child's disease improves, the family's quality of life also
With that in mind, I have included some tips for educating and
counseling AD families:
Stay true to the facts and give realistic
- Parents want to believe that a cure exists. It's important to
communicate early and often that AD is a chronic, relapsing
condition that can be controlled but not cured. Whenever a parent
tells me that a medication does not work for their child's AD, I
ask why. The most common reason they give is that "the eczema came
back" when they stopped the medication (they expect a cure)
- Only 60% of patients with AD will "outgrow" their eczema, and
we cannot reliably predict who will be in that group13
Promising that a child will outgrow his or her disease may give the
parents false hope
- Food allergy is not universal in AD. True food allergy
(positive food challenge) occurs in 15-30% of children with AD,
particularly those with moderate-to-severe AD.14 Blind
food elimination without testing is not recommended
- Skin atrophy from topical steroids is rare. Educate patients
regarding proper application and when to use (or not use) their
medication, but don't make them afraid to use it.
Identify and discuss hidden concerns (what
patients/parents often aren't telling you):
- They are looking for a "cure" or an easier form of treatment
- Parents fear that their child has cancer or will have permanent
- They have steroid phobia and fears of long-term antihistamine
use (if not asked, they may not tell you that they only use the
medication when the eczema is "really bad")
- They're concerned about food allergy (or looking for the magic
food to eliminate to cure their AD)
- Parents want a blood test
- Parents can't afford medications and/or office visit
- They're concerned by medications that sting when applied
- They want to try (or have already tried) alternative
Offer basic education, including:
- Role of emollients vs. topical medications
- Control vs. cure
- Common triggers (help identify triggers for the individual
child, including possible food allergies)
- Signs of skin infection
Individualize therapy and keep it as simple and
inexpensive as possible:
- Limit of 2 topical medications (face and body) if possible
- The abilities of the individual parent (don't give parents a
complex regimen that they are unable to follow)
- Less expensive options for emollients, soaps, and generic
- Ointment vs. cream
- Sedating vs. non-sedating antihistamine, which may help reduce
itching (limit to night use if possible to decrease daytime
- Maintenance therapy vs. how to manage acute flares
- Parents' and/or child's input (give them some control in the
development of the management plan, and help parents to develop
confidence in the management of their child's disease)
Identify family or psychosocial issues:
- Child's or parents' sleep disturbance (ask about - and
discourage - co-sleeping)
- Problems at school or daycare (attendance, grades, behavioral
issues, AD flaring with outdoor activities)
- Time spent on therapy (too much vs. too little)
- Time lost at work
- Marital problems related to child's AD
- Listen. Validate their feelings and opinions. Be understanding
- Praise what is done well
- If you change the management plan or medication, explain
- Teach coping skills (outlets to help with stress and personal
time for parents)
- Discuss relaxation techniques (massage therapy is helpful for
children with AD15)
Consider a therapist if there is:
- Significant family distress or dysfunction
- Excessive absence from school (especially if out of proportion
to AD severity)
- Poor coping skills (family or child)
- Evidence of depression, obsessive-compulsive disorder, or
Provide written material.
- Write down the patient's individual treatment plan. Written
summaries of therapy recommendations are important to reinforce
what was said during the visit.
- Offer information about AD, including educational websites
(such as the American Academy of Dermatology and the National
Eczema Association for Science and Society) and support
Advise against career choices that may exacerbate AD (or
cause hand eczema):16
- Cook (or kitchen or wet work)
- Factory worker
Education does require more time on the part of the physician or
nurse, but time spent at the first visit will yield more rapid
improvement in the child's AD and decrease the burden on the
family. Once families develop mastery and understanding of AD,
subsequent office visits become less complex.
- Bleiker TO, Shahidullah H, Dutton E, et al. The prevalence and
incidence of atopic dermatitis in a birth cohort: the importance of
a family history of atopy. Arch Dermatol.
- Paller AS, McAlister RO, Doyle JJ, et al. Perceptions of
physicians and pediatric patients about atopic dermatitis, its
impact, and its treatment. Clin Pediatr.
- Ben-Gashir MA, Seed PT, Hay RJ. Are quality of family life and
disease severity related in childhood atopic dermatitis? J Eur
Acad Dermatol Venereol. 2002;16(5):455-62.
- Moore K, David TJ, Murray CS, et al. Effect of childhood eczema
and asthma on parental sleep and well-being: a prospective
comparative study. Br J Dermatol. 2006;154(3):514-8.
- Su JC, Kemp AS, Varigos GA, et al. Atopic eczema: its impact on
the family and financial cost. Arch Dis Child.
- Holm EA, Jemec GBE. Time spent on treatment of atopic
dermatitis: a new method of measuring pediatric morbidity?
Pediatr Dermatol 2004;21(6):623-7.
- Balkrishnan R, Housman TS, Grummer S, et al. The family impact
of atopic dermatitis in children: the role of the parent caregiver.
Pediatr Dermatol. 2003;20(1):5-10.
- Chamlin SL, Frieden IJ, Williams ML, et al. Effects of atopic
dermatitis on young American children and their families.
Pediatrics. 2004; 114(3):607-11.
- Chamlin SL. The psychosocial burden of childhood atopic
dermatitis. Dermatol Ther. 2006;19(2):104-7.
- Chamlin SL, Mattson CL, Frieden IJ, et al. The price of
pruritus: sleep disturbance and cosleeping in atopic dermatitis.
Arch Pediatr Adolesc Med. 2005;159(8):745-50.
- Balkrishnan R, Manuel J, Clarke J, et al. Effects of an episode
of specialist care on the impact of childhood atopic dermatitis on
the child's family. J Pediatr Health Care.
- Cork MJ, Britton J, Butler L, et al. Comparison of parent
knowledge, therapy utilization and severity of atopic eczema before
and after explanation and demonstration of topical therapies by a
specialist dermatology nurse. Br J Dermatol.
- Graham-Brown RAC. Atopic dermatitis: predictions, expectations,
and outcomes. J Amer Acad Dermatol. 2001;45(1 Suppl):S61-3.
- Lever R. The role of food in atopic eczema. J Amer Acad
Dermatol. 2001(Suppl 1);45:S57-60.
- Schachner L, Field T, Hernandez-Reif M, et al. Atopic
dermatitis symptoms decreased in children following massage
therapy. Pediatr Dermatol. 1998;15(5):390-5.
- Cvetkovski RS, Zachariae R, Jensen H, et al. Prognosis of
occupational hand eczema: a follow-up study. Arch