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• W1972578964 abstract "The multidimensional impact of chronic skin diseases on the individual and their family unit has been, until recently, under-appreciated, and measurement has proved difficult because of its essentially subjective nature. Health-Related Quality of Life (HRQoL) measures were devised as an attempt to provide standardized quantitative data and a more meaningful and structured approach to patient care. Used together with physical measures of eczema severity, they can help to provide a more holistic approach to disease management and are perceived as a positive indication of the physician's interest by the patient/family, helping to establish good rapport. It is to be hoped that the resultant improved patient/physician relationship may prove beneficial to treatment concordance and disease management (Carroll et al., 2005Carroll C.L. Balkrishanan R. Feldman S.R. Fleischer A.B. Manuel J.C. The burden of atopic dermatitis: Impact on the patient, family and society.Pediatr Dermatol. 2005; 22: 192-199Crossref PubMed Scopus (337) Google Scholar). It is generally agreed that HRQoL measures should include items on physical, psychological, and social functioning and well-being, but frequently the content of domains are poorly specified (Eiser and Morse, 2001aEiser C. Morse R. The measurement of quality of life in children: Past and future perspectives.J Dev Behav Pediatr. 2001; 22: 248-256Crossref PubMed Scopus (223) Google Scholar). There are many variables to consider, which include age, gender, education, social class, ethnicity, and the respondent's own psychological affect. Many scales lack precision regarding the content of domains of HRQoL, and most may not be culturally appropriate for all ethnic groups (Eiser and Morse, 2001aEiser C. Morse R. The measurement of quality of life in children: Past and future perspectives.J Dev Behav Pediatr. 2001; 22: 248-256Crossref PubMed Scopus (223) Google Scholar). A compromise has to be struck between scales that include many items that may be more able to capture maximum data in a research setting, versus scales with fewer items providing less data, but with the advantage of ease of use in a clinical setting. When investigating HRQoL it is essential to use existing questionnaires proven to be valid and reliable as a gold standard, and devising new ones should be avoided unless it can be shown that this provides extra and relevant data. Where new questionnaires are deemed essential, they should be validated (for construction, content, and criterion) and determined to be reliable (intra- and inter-observer reliability and internal consistency). No single scale is likely to be ideal for all circumstances, and it is often useful to include a range of previously validated questionnaires. These could include a generic HRQoL, a measure of psychological stress and anxiety and a gold standard for the specific speciality or target disease, as well as the particular scale under development, and they should be appropriate for the age and ethnicity of the target population. An important consideration when investigating HRQoL in children is the use of proxy measures, usually completed by the parent(s) or other caregiver. These are necessary for younger children or those with cognitive difficulties and can be used alongside child-reported indices for school-aged children. It should be recognized, however, that parental and child views on the impact of disease may vary, particularly in the case of subjective emotions such as sadness or embarrassment, although there is greater agreement over physical disability (Eiser and Morse, 2001bEiser C. Morse R. Can parents rate their child's health-related quality of life? Results of a systematic review.Qual Life Res. 2001; 10: 347-357Crossref PubMed Scopus (837) Google Scholar). Although many studies have shown that HRQoL impact increases with disease severity, it is important to remember that this relationship is not necessarily a linear one, but is dependent upon various factors, including body site and a person's coping ability. The rising incidence of atopic dermatitis in industrialized countries throws a large burden onto the family group, society, and health care resources. Some attempt has been made to measure the psychosocial and financial impact.Su et al., 1997Su J.C. Kemp A.S. Varigos G.A. Nolan T.M. Atopic eczema: its impact on the family and financial cost.Arch Dis Child. 1997; 76: 159-162Crossref PubMed Scopus (312) Google Scholar used a generic questionnaire for determining the effect of chronic disease on parent and families. This approach allowed direct comparison of families of children with eczema to those with other chronic diseases, such as diabetes and asthma. They concluded that families with moderate to severe eczema had a significantly higher impact on family score than families of diabetic children, and the financial cost of managing eczema both to the community and families was higher than managing asthma. Use of the dermatology-specific Children's Dermatology Quality of Life Index (CDLQI) has demonstrated that eczema and other itchy dermatoses have a greater overall impact on HRQoL than other common chronic diseases, such as acne or psoriasis in school-age children (Lewis-Jones and Finlay, 1995Lewis-Jones M.S. Finlay A.Y. The children's dermatology life quality index (CDLQI): Initial validation and practical use.Br J Dermatol. 1995; 132: 942-949Crossref PubMed Scopus (655) Google Scholar). This 10-item measure for school-age children provides a simple, rapid scale for everyday clinical use, but the small number of items may account for lower scores in diseases that have a large psychological impact but exhibit fewer clinical symptoms. Many studies, including our own, have found that children with eczema report itching, sleep loss, and problems at school as the most frequent and important items. A recent study in our department comparing the child versus parent's perspective in eczema showed reasonably good agreement. 1Beattie and Lewis-Jones: Brit J Dermatol, accepted for publication.1Beattie and Lewis-Jones: Brit J Dermatol, accepted for publication. Use of the Infant's Dermatitis Quality of Life index (IDQoL) demonstrated that infants with eczema also have the greatest problems with itching, sleep loss, mood, and behavioral changes (Lewis-Jones et al., 2001Lewis-Jones M.S. Finlay A.Y. Dykes P. The infants' dermatitis quality of life index (IDQOL).Br J Dermatol. 2001; 144: 104-110Crossref PubMed Scopus (241) Google Scholar). Other reported problems were discomfort with treatment and difficulties with playing, bathing, dressing, and at meal times. In a family study of eczema we used in-depth ethnographic interviews and brainstorming sessions to provide qualitative data for construction of the 10-question Dermatitis Family Index (DFI), and demonstrated a large psychosocial impact on families of children up to age 12 y (Lawson et al., 1998Lawson V. Lewis-Jones M.S. Finlay A.Y. Reid P. Owens R.G. The family impact of childhood atopic dermatitis: The Dermatitis Family Impact questionnaire.Br J Dermatol. 1998; 138: 107-113Crossref PubMed Scopus (297) Google Scholar). Eleven problem areas were identified, of which the practical difficulties of caring for a child with atopic eczema (skin care, feeding, shopping, washing, and cleaning), psychological pressures, physical exhaustion, and restriction of family lifestyle were the areas of highest impact. Other areas of life impact included sleep disturbance, financial, recreational, and family relationships. Financial pressures were rated as relatively unimportant for the majority of families (health care is free for children in the UK) but a minority, all single parent families, faced great financial hardship because of their child's eczema. Parents rated the child being able to cope with their eczema as being of paramount importance.Balkrishnan et al., 2003Balkrishnan R. Housman T.S. Carroll C. Feldman S.R. Fleischer A.B. Disease severity and associated family impact in childhood atopic dermatitis.Arch Dis Child. 2003; 88: 423-427Crossref PubMed Scopus (50) Google Scholar used a modified version of the DFI for use in the USA and demonstrated that the parent/caregiver's perception of clinical severity was the most significant predictor of impact of eczema on the family. The CDLQI, IDQoL, and DFI are validated and proven as reliable in many languages. Sensitivity to clinical change has been demonstrated and quantified for the CDLQI and DFI (Ben-Gashir et al., 2002Ben-Gashir M.A. Seed P.T. Hay R.J. Are quality of life and diseases severity related in childhood atopic dermatitis?.J Eur Acad Dermatovenereol. 2002; 16: 455-462Crossref PubMed Scopus (99) Google Scholar,Ben-Gashir et al., 2004Ben-Gashir M.A. Seed P.T. Hay R.J. Quality of life and disease severity are correlated in children with atopic dermatitis.Br J Dermatol. 2004; 150: 284-290Crossref PubMed Scopus (146) Google Scholar), making them useful for clinical studies and outpatient audit purposes. 2Beattie and Lewis-Jones, accepted for publication.2Beattie and Lewis-Jones, accepted for publication. The disadvantage of the brevity of these three measures is the relative lack of information they provide on the specific life domains affected, but they are useful for flagging problem areas for further exploration where appropriate. In a study from Germany using several established measures,Warschburger et al., 2004Warschburger P. Buchholz H.T. Petermann F. Psychological adjustment in parents of young children with atopic dermatitis: Which factors predict parental quality of life?.Br J Dermatol. 2004; 150: 304-311Crossref PubMed Scopus (72) Google Scholar examined the psychological adjustment in parents of young children with eczema and the impact on their quality of life. They found high rates of psychological stress, levels of which were directly related to the severity of the child's eczema.McKenna et al., 2005McKenna S.P. Whalley D. Dewar A.L. et al.International development of the Parents' Index of Quality of Life in Atopic Dermatitis (PIQoL-AD).Qual Life Res. 2005; 14: 231-241Crossref PubMed Scopus (74) Google Scholar recently published on the further development of the PIQoL-AD in several European countries. This 28-item scale measures the impact of eczema in families of young children and has promising validity, but has yet to be compared to other similar measures. They highlight the psychological impact of eczema and confirm the level of physical exhaustion suffered by parents due to the child's sleeplessness. In this issue, qualitative data fromChamlin et al., 2005Chamlin S.L. Cella D. Frieden I.J. Williams M.L. Mancini A.J. Lai J.S. Chren M.M. Development of the Childhood Atopic Dermatitis Impact Scale (CADIS): Initial validation of a quality-of life measure for young children with atopic dermatitis and their families.J Invest Dermatol. 2005; 125: 1106-1111Abstract Full Text Full Text PDF PubMed Scopus (81) Google Scholar correspond well with the aforementioned and other family studies. They describe the development and initial validation studies of the Childhood Atopic Dermatitis Impact Score (CADIS). This novel measure for use by parents of young American children less than 6 y of age combines a proxy measure of the impact on the child (four subscales) and the impact on the family (four subscales) in 45 questions. The approach of combining the proxy measure for the child's and the parents' rating scale is, I think, an excellent one. They highlight the huge psychological pressure for parents, and it is a weakness, therefore, that they omitted the use of other validated HRQoL scales or measures of stress and anxiety as comparators, thus robbing them of the opportunity to obtain valuable additional information and validation. They are, however, not alone in this omission; use of comparative measures has been a failing of many HRQoL studies, including some of our own work. As the field of HRQoL expands, it is important that we use a more structured epidemiological and comparative approach if it is to advance beyond “infancy.” Despite their shortcomings, HRQoL studies have done much to identify the terrible burden that childhood eczema places on the child and the family unit, which is currently unrecognized by health care analysts. The high world prevalence of atopic eczema and the other atopic diseases makes atopy one of the most important groups of all chronic childhood diseases. Identification of both the financial and psychosocial burden to individuals and society will enable us to argue for the appropriate necessary resources for disease management in the future." @default.
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• W1972578964 title "Measuring the Burden of Atopic Eczema in Young Children and the Family Unit" @default.
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