Living with eczema : a multidisciplinary approach

Abstract

Background: Eczema is one of the most common diseases in the population, affecting individuals of all ages. The impact on physical and psychosocial wellbeing is important. This thesis describes some aspects of this complex of problems. The overall aim was to investigate the experience of living with eczema. Subjects: Adult individuals with self-reported eczema.

Methods: In Study I, a questionnaire was sent to 1111 adult individuals, half of whom had school medical records from childhood that suggested atopic dermatitis, and an equal number of controls. The response rate was 70.5%. The first question 'Have you had childhood eczema?' was followed by questions about eczema later in life. Study II used a combination of methods. A questionnaire regarding care and treatment was sent to 75 patients with atopic dermatitis or psoriasis after a completed phototherapy treatment period. The response rate was 63%. Among the responders, 19 individuals who had volunteered were interviewed in gender specific groups or pairs. In Study III, a purposeful sample of 19 individuals was interviewed about their everyday experiences of eczema. In Study IV, 34707 individuals in Stockholm County Council responded to a public health questionnaire, which included a health related quality of life instrument, EQ-5D, and a validated question about hand eczema during the past year.

Results: Of the 403 cases that were documented by a dermatologist in Study I, 29% did not report childhood eczema in the questionnaire. One of the differences between those who did and did not recollect their childhood atopic dermatitis concerned who had reported the diagnostic signs in childhood. Those who remembered their childhood eczema had more often had the condition reported by parents and school health personnel. Those who had forgotten had more often had their eczema reported only by parents or school health personnel. More in the remembering group also had eczema after the age of 15 years, or reported having had hand eczema at some time during their life, than in the forgetful group. In Study II the main findings emanating from the questionnaire and interview data fell under three areas of clinical relevance: information to patients must be individually designed with a gender perspective; men and women have different attitudes toward greasing, which must be kept in mind in clinical practice; and women often appear to be underprescribed UV treatment. The analysis of the interviews in Study III revealed various aspects of how the body of a person with eczema dys-appears . At a bodily level, the skin dys-appears with itching and burning sensations as well as a general feeling of being ill, or a bodily restlessness. At a social level, dys-appearance is related to considerations about how one is different from others and one s appearance in the gaze of others, e.g. concerning personal hygiene and bleeding patches. These bodily and social dys-appearances are to some degree mutually interactive, and become deeply intertwined in the daily lives of the interviewees, with respect to cultural, social and gender norms. In Study IV, it was found that HRQoL was lowered in individuals of both genders with hand eczema irrespective of age. EQ-5D index for hand eczema was on par with that for psoriasis and asthma, all common diseases with impact on public health.

Conclusion: For the affected individuals, eczema has a considerable psychosocial impact. Their voices tell of a life with eczema: sharing their day-to-day experiences, as well as their experiences as patients, they give important information and a deeper understanding of this disease. Together with the quantitative HRQoL data showing the magnitude of this problem, this points to the importance of intensified preventive measures and treatment efforts. Keywords: body, dys-appearance, eczema, EQ-5D, gender, HRQoL, illness experience, interviews, narratives, population-based study, public health, questionnaire, recall bias