What do members of the National Eczema Society really want?

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Abstract
In order to assess the impact of eczema on the lives of affected individuals a postal questionnaire was sent to all members of the National Eczema Society (NES). The survey also sought to ascertain their expectations of their initial consultation with general practitioners and hospital doctors; to assess their satisfaction with these consultations; to obtain their views on the treatment prescribed, and their reasons for joining the NES. Information on 1972 adults (614 male, 1358 female) and from 1944 parents of affected children was received, representing an overall response rate of 29%. The work of 1061 (54%) adults, and the choice of career of 391 (20%) had been affected. Eczema affected the ability to perform domestic duties in 1128 (83%) women compared with 439 (71%) men. Social and leisure activities were affected in 1269 (64%) of adults. The development of personal relationships had been impaired in 273 (14%), and the sex lives of 373 (19%) had been affected. In children sleep (60%) was the most commonly affected activity. The expectations of the initial consultation with their general practitioner of 659 (17%) had not at all been met, of 2528 (65%) partly met, and of only 483 (12%) completely met; 2638 patients had seen a hospital specialist. The expectations of 478 (18%) had not at all been met, of 1164 (62%) partly met, and of only 512 (19%) completely met. Forty‐lour per cent (1713) were either‘extremely satisfied’or 'satisfied’with the treatments they had been given, 1529 (40%) were‘neutral', 480 (12%) were dissatisfied, and 103 (2·6%) were extremely dissatisfied. Seventy‐two per cent of the respondents stated their main reason for joining the NES was to obtain further information about eczema and its treatment. Only 10% wished to be put in touch with other sufferers. Members of patient support groups arc likely to be highly motivated. This may be due to increased severity of disease, increased anxiety or increased dissatisfaction with treatment. Thus it may be difficult to generalize from the results of this survey, particularly as the response rate was 29%. However, the results do reveal the considerable effect of eczema upon the lives of affected individuals. It also revealed much dissatisfaction with patients’initial consultations with both general practitioners and hospital doctors. Patients require from doctors not only treatment and diagnosis, but also an explanation as to the nature of eczema and advice on how to use the treatments prescribed. These requirements are reflected in their reasons for joining the NES.