Chapter 4. Education
Education of parents and older patients is an important component of basic care of patients with atopic dermatitis. Understanding the chronic, relapsing nature of atopic dermatitis and the role of exacerbating factors are important concepts that form a foundation for further discussions of therapeutic options. Clinicians treating patients with atopic dermatitis should provide both verbal and written information that includes general disease information along with detailed skin care recommendations (HANDOUT: Dry Skin). Written step-care plans will improve caregivers’ abilities to follow prescribed treatments and skin care. Preprinted patient care plans, that allow easy recording of specific prescription agents and skin care may be useful (HANDOUT: Action Plan).
Skin care plans need to take into consideration a number of factors in an attempt to individualize the plan and help ensure implementation, including patient’s age, severity of disease and current environment. In addition, development of a skin care program that is agreed upon by the clinician, caregivers and older patient requires open communication. Often, practical issues such as caregiver availability and whether the person bringing a child to visits is the one who does the skin care are important to successful management. Caregivers’ beliefs regarding illness and medications that may include factors unique to specific cultures or expectations for complete or immediate cure need to be recognized and dealt with. In depth discussions can require extended clinic visits and adequate time needs to be set aside for proper education. Patients and caregivers need an appropriate level of understanding to ensure good outcomes. Hands-on demonstration of skin care methods is recommended, and may display reasons for apparent prior treatment failures.
When patients with atopic dermatitis have suboptimal responses to prescribed therapy, a common scenario is to prescribe another medication, without attempts to evaluate the whole picture. After several such encounters, patients may seek help elsewhere or are labeled as therapeutic failures. Our experience is that the vast majority of patients labeled as having treatment failures, or with a diagnosis of recalcitrant atopic dermatitis, can be helped with conventional therapy when appropriate attention is given to the individual patient, and a regimen of care delineated and adequately taught. Realistic expectations should be set, and a clear message that at present, treatment is directed at controlling disease, not curing it.
Examples of patients who were labeled as treatment failures that were easily corrected upon appropriate review and education include a patient whose mother remembered being told that both hydration and emollients were important, but who applied a thick coat of petrolatum to the child’s body prior to taking a bath. Another patient’s parent demonstrated his approach to using topical steroids by applying a minute quantity from a 15 gram tube and rubbing it in over a large area of involvement. Further questioning revealed that the patient had been using the same tube, which should have lasted no more than one week for several months.
A mistake that can result in side effects such as skin atrophy or striae is the application of a high potency corticosteroid (e.g. betamethasone dipropionate 0.05%) to an area of the body such as the face, groin or axillae, while using a lower potency corticosteroid (e.g. hydrocortisone 2.5%) to the trunk or extremities, based on the caregiver’s perception that corticosteroid potency is based on the stated percent value (i.e. 0.05% vs 2.5%), rather than on the specific corticosteroid preparation (i.e. betamethasone dipropionate vs hydrocortisone). This can be avoided through education as well as explicit instructions when writing prescriptions.
Caregivers can benefit from reliable references, as families otherwise seeking information may find misleading and potentially harmful information. It is important to remind caregivers to review any alternative therapies or advice gained through outside sources with their clinician. A "soothing balm" from a well-meaning relative could in fact be responsible for sensitization resulting in allergic contact dermatitis complicating a child’s atopic dermatitis. A "natural skin care product" brought by a friend from abroad could be adulterated by a potent steroid. Often, even small changes to a care regimen can either be detrimental or of little benefit, but can add to the cost of the treatment regimen. An open and ongoing dialog between the clinician and caregivers improves the likelihood of adherence with the treatment plan and leads to improved outcomes.
Families of patients with atopic dermatitis can contact national organizations, which provide educational materials. Brochures and videos can be obtained from the Eczema Association For Science and Education (800-818-7546) and information, instruction sheets, and brochures are also available from the National Jewish Medical and Research Center Lung Line (800 222-LUNG).
Caregivers and older patients should also be counseled regarding the natural history and prognosis of atopic dermatitis. Since patients with atopic dermatitis, including those who appear to outgrow their disease, are prone to hand eczema, providing appropriate vocational counseling is important. Hand eczema is an important cause of occupational disability and jobs requiring wet work or frequent hand washing may not be good choices for patients with significant atopic dermatitis.