Significance and impact of atopic eczema Atopic eczema is a significant disease. Children with atopic eczema are a high-priority group for effective intervention. Few individuals experience handicap in adult life with the very chronic form of atopic eczema. However, the onset of disease occurs before the age of 2 years in 90% of newly diagnosed cases. The intractable itch of atopic eczema can cause sleep loss, misery to children and disruption to family life (Williams, 1997). Atopic eczema can be a disfiguring and very burdensome due to the unrelenting itch and desire to scratch. Scratching damages the skin, disturbs sleep, disrupts relationships, triggers mood changes and alters affect (Lewis-Jones et al., 2001). Sleep loss is an important measure of disease intensity in children with atopic eczema (Reid and Lewis-Jones, 1995). Atopic eczema is the cause of significant emotional difficulties for many sufferers as well as other family members (Elliott and Luker, 1997). The latter study of mothers caring for children with severe atopic eczema highlights the extra burden of normal childcare and the additional housework generated by the disease. Elliott and Luker found that mothers described the major task in keeping their child entertained in order to prevent scratching. This is further compounded by the fact that such children were often found to be irritable and had short concentration spans. There is a substantial economic cost of eczema to the patient (Kemp, 2003) and the health service (Verboom et al., 2002). Herd et al. (1996) estimated that in 1996 the annual UK personal cost to patients would be £2,297 million, the cost to the service £125 million with a substantial loss of school and working days. The substantial economic impact of the disease is supported by studies such as that from Australia (Kemp, 2003). Measurement of the impact of skin disease on quality of life is important for our understanding and management of skin diseases. Several studies suggest that atopic eczema has a more profound effect on quality of life than other skin diseases, such as acne and psoriasis (Lewis-Jones and Finlay, 1995).Therefore, it is desirable to measure the impact on quality of life as a potential outcome of intervention. The relationship between the severity of atopic eczema in children and quality of life has been established (Ben-Gashir et al., 2004). Problematic symptoms such as itching can adversely affect quality of life. Itch leads to scratching and these may have a significant impact on a child’s sleep, quality of life (Lewis-Jones et al., 2001) and family (Elliott and Luker, 1997). Due to these various impacts of atopic eczema, it is necessary to measure changes in quality of life impact as well as disease severity as a key outcome measure (further details can be obtained in Assessment and planning care and Psychological and social aspects of skin care). Also, since caregivers, especially parents, are often required to assist with treatments, their ability and confidence are also relevant outcomes to measure. Given that people with atopic eczema require special clothing, bedding, frequent applications of greasy ointments (Reid and Lewis-Jones, 1995), treatment adherence also becomes a relevant clinical outcome to assess. Nurses have a key role in supporting the parents of children with atopic eczema. The challenge for parents is highlighted in the research by Elliott and Luker (1997) and ongoing work by Surridge (2005) on the challenges of appraising knowledge sources to find tolerable solutions to their child’s eczema. Parental education is discussed later, but is also highlighted in Helping patients make the most of their treatment, on the importance of parental education to make the most of treatment. |
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