Educational programmes for young people with eczema
Authors: Hywel C Williams
Journal: BMJ (2006)

Eczema (previously known as atopic dermatitis or atopic eczema)1 affects up to 20% of children worldwide.2 Although most eczema in children is mild,3 caring for a child with chronic severe eczema can be distressing. Sleep disturbance from scratching affects the whole family,4 and witnessing a child scratching their limbs until they bleed is agonising. In this week's BMJ a randomised controlled trial by Staab and colleagues (p 933) reports an evaluation of educational programmes for young people with eczema and their families, and provides new and useful evidence.5

Eczema carries a high economic burden, with costs comparable to asthma.6 The causes of eczema are unclear, and treatment is geared largely around restoring the barrier function of the dry skin typical of eczema, and by suppressing skin inflammation with topical corticosteroids and other topical or systemic agents.7

A systematic review of 272 randomised controlled trials of eczema treatments concluded that most trials were of poor quality, too small, and too short in duration for such a chronic relapsing disease.8 Most of the trials in this review had evaluated questions about similar drugs rather than other potentially important interventions—such as special clothing, diets, reducing house dust mites, and psychological interventions. The study by Staab and colleagues is a refreshing exception to this legacy.5

Studies have shown the benefit of educational programmes in chronic diseases such as asthma,9 so there is every reason to suppose that such programmes could also be helpful for a disease like eczema. Indeed, various types of schools for children with eczema and their parents have been around for at least 16 years.10 Yet Staab and colleagues' German atopic dermatitis intervention study (GADIS) is the first large trial to evaluate long term outcomes. Another strength of this study is the use of clearly defined educational interventions that were developed over several years in German academies.

The GADIS trial showed that, compared with standard care, six group sessions of two hours each week resulted in sustained improvements in the primary outcomes of eczema severity as measured on the SCORAD eczema severity scale and in improved quality of life. The interventions comprised training sessions led by paediatricians, dermatologists, psychologists, nurses, and dieticians, and they were tailored for the three age groups of 0-7 years (parents only), 8-13 years (parents and children) and 14-18 years (parents optional for the first two sessions).

The GADIS study is well reported. Randomisation and subsequent concealment were robust, although blinding of assessment by the investigators could have been compromised. No intention to treat analysis was done, however, and more than twice as many participants were lost to follow-up in the control arm than in the intervention groups, though the overall follow-up rates of 83% were good for such a long term study. It is not clear to what extent the final differences between the groups were caused by differential use of appropriate treatments, and the magnitude of the overall benefit was not large. For example, the difference in eczema severity measured on the SCORAD scale (range from 0 to 103) between the educational and control group was only 5 points in children aged 3 months to 7 years. The clinical interpretation of such a difference on a non-linear scale is difficult—although, as the authors point out, any degree of improvement is worth while for someone with eczema.

The education programmes described in the study are complex interventions with a range of possible direct and indirect benefits that are difficult to disentangle. Even though the interventions are unusually well described, the mere act of bringing parents together in a supportive environment may have benefits for psychological wellbeing and the sharing of practical knowledge about eczema care among families.11 Furthermore, the techniques of stress management and relaxation used in the study may play a key role in benefiting people with eczema.

Perhaps the simplest explanation for the benefit of such educational programmes is better use of existing treatment. As Lapsley (p 936) points out in his accompanying commentary, poor adherence to treatment is an important cause of treatment failure that can be improved through education.12 Families need time and access to clear, consistent, and informed advice about how to use treatments such as topical corticosteroids safely and in adequate quantities for inflamed, itchy skin. They also need to understand how and when to use an acceptable emollient for the child. It may not matter how the overall intervention works as long as it works at a reasonable cost, is acceptable to patients and families, and does not cause any harm.

Should we now all set up eczema schools? Eczema schools of one type or another are already being run in several countries, including Japan, Denmark, Germany, and the United States, and it is important that such interventions are tailored to the cultural and social needs of their users. One size does not fit all. Educational schools should promote only those interventions that are based on good evidence because there is a danger that they could become a breeding ground for dogma, ritual, and conflicting advice. The approach highlighted in the GADIS trial of setting up a multidisciplinary association for atopic eczema education (AGNES) seems like a good way forward to ensure some degree of quality control and consistency.5

Cost is an important issue that was not mentioned in the GADIS study. Even though it may seem quite cheap to pull some parents together with a healthcare professional for a few evenings, the costs of training 6-10 specialists for 40 hours each and then expecting them to run such schools outside of working hours are considerable and need quantifying. A range of other interventions providing an individualised educational component—such as dedicated eczema clinics supported by specialist nurses or parent support groups—may be as effective as evening schools for eczema.11,13,14 Future educational programmes for families affected by eczema should be evaluated. Lastly, the eagerly awaited results of a Cochrane review on psychological and educational interventions for eczema should help to put the GADIS study in context.15