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Clinical Updates

K. Robin Carder, MD

Patient Education and Psychosocial Support in the Management of Atopic Dermatitis (AD)

K. Robin Carder

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 vacations.9

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 helplessness.8

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 child.9

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 improves.3

With that in mind, I have included some tips for educating and counseling AD families:

Stay true to the facts and give realistic expectations:

  • 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 ("a pill")
  • Parents fear that their child has cancer or will have permanent scarring
  • 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 co-payments
  • They're concerned by medications that sting when applied
  • They want to try (or have already tried) alternative therapies

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 medications
  • Ointment vs. cream
  • Sedating vs. non-sedating antihistamine, which may help reduce itching (limit to night use if possible to decrease daytime drowsiness)
  • 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

Give support:

  • Listen. Validate their feelings and opinions. Be understanding and non-judgmental
  • Praise what is done well
  • If you change the management plan or medication, explain why
  • 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 neurotic excoriations

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 groups.

Advise against career choices that may exacerbate AD (or cause hand eczema):16

  • Hairdresser
  • Cook (or kitchen or wet work)
  • Butcher
  • Factory worker
  • Printer
  • Carpenter

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.

 

References

  1. 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. 2000;136(2):274.
  2. Paller AS, McAlister RO, Doyle JJ, et al. Perceptions of physicians and pediatric patients about atopic dermatitis, its impact, and its treatment. Clin Pediatr. 2002;41(5):323-32.
  3. 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.
  4. 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.
  5. Su JC, Kemp AS, Varigos GA, et al. Atopic eczema: its impact on the family and financial cost. Arch Dis Child. 1997;76(2):159-62.
  6. 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.
  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.
  8. 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.
  9. Chamlin SL. The psychosocial burden of childhood atopic dermatitis. Dermatol Ther. 2006;19(2):104-7.
  10. 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.
  11. 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. 2003;17(4):184-9.
  12. 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. 2003;149(3):582-9.
  13. Graham-Brown RAC. Atopic dermatitis: predictions, expectations, and outcomes. J Amer Acad Dermatol. 2001;45(1 Suppl):S61-3.
  14. Lever R. The role of food in atopic eczema. J Amer Acad Dermatol. 2001(Suppl 1);45:S57-60.
  15. 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.
  16. Cvetkovski RS, Zachariae R, Jensen H, et al. Prognosis of occupational hand eczema: a follow-up study. Arch Dermatol. 2006;142(3):305-11.
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