Quality of life and childhood atopic dermatitis: The misery of living with childhood eczema

International Journal of Clinical Practice

Volumn 60, Issue 8, 2006, Pages 984-992

  Lewis Jones, Sue ^a  

^a UNIVERSITY OF DUNDEE   (United Kingdom)

Author keywords

Atopic dermatitis; CADIS; CDLQI; Childhood atopic eczema; DFI; Family quality of life; Health related quality of life; IDQoL; PIQoL AD

Indexed keywords

CORTICOSTEROID DERIVATIVE; PIMECROLIMUS;

ANGER; ANXIETY; ASTHMA; ATOPIC DERMATITIS; AVOIDANCE BEHAVIOR; BULLYING; CHILD; CHILD HEALTH CARE; CHILDHOOD DISEASE; CLINICAL ASSESSMENT TOOL; CLINICAL TRIAL; CLOTHING; COST OF ILLNESS; DEPRESSION; DIABETES MELLITUS; DIAGNOSTIC VALUE; DISEASE ASSOCIATION; DISEASE SEVERITY; EXHAUSTION; FAMILY LIFE; FATIGUE; FINANCIAL MANAGEMENT; FRIEND; GUILT; HEALTH CARE COST; HEALTH CARE DELIVERY; HEALTH ECONOMICS; HOPELESSNESS; HUMAN; INSOMNIA; LEISURE; LIFESTYLE; LOWEST INCOME GROUP; MEDICAL AUDIT; MENTAL DISEASE; MOOD DISORDER; PATIENT EDUCATION; PHYSICAL ACTIVITY; PLAY; PREVALENCE; PRIORITY JOURNAL; PRURITUS; PSYCHOLOGICAL ASPECT; QUALITY OF LIFE; RELAPSE; REVIEW; SLEEP DEPRIVATION; SOCIAL ASPECT; SOCIAL ISOLATION; SOCIAL PSYCHOLOGY; SOCIETY; SPORT; SWIMMING; SYMPTOMATOLOGY; TREATMENT OUTCOME; UNITED KINGDOM;

ACTIVITIES OF DAILY LIVING; ATTITUDE TO HEALTH; CHILD; COST OF ILLNESS; DERMATITIS, ATOPIC; FAMILY HEALTH; HUMANS; MENTAL DISORDERS; PARENTS; QUALITY OF LIFE; SEVERITY OF ILLNESS INDEX; SLEEP DISORDERS;

EID: 33746117203     PISSN: 13685031     EISSN: 17421241     Source Type: Journal    
DOI: 10.1111/j.1742-1241.2006.01047.x     Document Type: Review

References (81)

1. The International Study of Asthma and Allergies in Childhood (ISAAC) Steering Committee. Worldwide variation in prevalence of symptoms of asthma, allergic rhinoconjunctivitis, and atopic eczema: ISAAC. Lancet 1998; 351: 1225-32.
2. Williams HC. Clinical practice. Atopic dermatitis. N Engl J Med 2005; 352: 2314-24.
3. Kay J, Gawkrodger DJ, Mortimer MJ, Jaron AG. The prevalence of childhood atopic eczema in a general population. J Am Acad Dermatol 1994; 30: 35-9.
4. Emerson RM, Charman CR, Williams HC. The Nottingham Eczema Severity Score: Preliminary refinement of the Rajka and Langeland grading. Br J Dermatol 2000; 142: 288-97.
5. Emerson RM, Williams HC, Allen BR, Mehta R, Finlay AY. How much disability does childhood atopic eczema cause compared to other common childhood problems. Br J Dermatol 1997; 137 (S50): 19 (Abstract).
6. Su JC, Kemp AS, Varigos GA, Nolan TM. Atopic eczema: Its impact on the family and financial cost. Arch Dis Child 1997; 76: 159-62.
7. Beattie PB, Lewis-Jones MS. Impairment of quality of life in children with skin disease; further validation of the CDLQI and the CLQI. Br J Dermatol 2003; 148 (S64): 77 (Abstract).
8. Beattie PE, Lewis-Jones MS. A comparative study of impairment of Quality Of Life (QOL) in children with skin disease and children with other chronic childhood diseases. Br J Dermatol 2006; 155: 145-55.
9. Lewis Jones MS, Finlay AY. The Children's Dermatology Life Quality Index (CDLQI ©): Initial validation and practical use. Br J Dermatol 1995; 132: 942-9.
10. Lapidus CS, Kerr PE. Social impact of atopic dermatitis. Med Health R I 2001; 84: 294-5.
11. Carroll CL, Balkrishnan R, Feldman SR, Fleischer AB Jr, Manuel JC. The burden of atopic dermatitis: Impact on the patient, family, and society. Pediatr Dermatol 2005; 22: 192-9.
12. Lawson V, Lewis-Jones MS, Finlay AY, Reid P, Owens RG. The family impact of childhood atopic dermatitis: The Dermatitis Family Impact questionnaire. Br J Dermatol 1998; 138: 107-13.
13. Lewis-Jones MS, Charman C. Scoring severity and quality of life assessment in atopic dermatitis. In: Harper J, Oranje A, Prose N, eds. Textbook of Paediatric Dermatology, 2nd edn. UK: Blackwell Science, 2005.
14. Lewis-Jones MS, Finlay AY, Dykes P. The Infants' Dermatitis Quality of Life Index. Br J Dermatol 2001; 144: 104-10.
15. McKenna SP, Whalley D, Dewar AL et al. International development of the Parents' Index of Quality of Life in Atopic Dermatitis (PIQoL-AD). Qual Life Res 2005; 14: 231-41.
16. Chamlin SL, Cella D, Frieden IJ et al. Development of the Childhood Atopic Dermatitis Impact Scale: Initial validation of a quality-of-life measure for young children with atopic dermatitis and their families. J Invest Dermatol 2005; 125: 1106-11.
17. Lewis-Jones S. Measuring the burden of atopic eczema in young children and the family unit. J Invest Dermatol 2005; 125: Viii.
18. Long CC, Funnell CM, Collard R, Finlay AY. What do members of the National Eczema Society really want ? Clin Exp Dermatol 1993; 18: 516-22.
19. Reid P, Lewis-Jones MS. Sleep disturbance in preschoolers with atopic eczema. Clin Exp Dermatol 1995; 20: 38-41.
20. Chamlin SL, Frieden IJ, Williams ML, Chren MM. Effects of atopic dermatitis on young American children and their families. Pediatrics 2004; 114: 607-11.
21. Daud LR, Garralda ME, David TJ. Psychosocial adjustment in preschool children with atopic eczema. Arch Dis Child 1993; 69: 670-6.
22. Stores G, Burrows AB, Crawfors C. Physiological sleep disturbance in children with atopic dermatitis: A case controlled study. Pediatr Dermatol 1998; 15: 264-8.
23. Dahl RE, Bernhisel-Broadbent J, Scanlon-Holdford S, Sampson HA, Lupo M. Sleep disturbances in children with atopic dermatitis. Arch Pediatr Adolesc Med 1995; 149: 856-60.
24. Richman N. A community survey of characteristics of one- to two- year-olds with sleep disruptions. J Am Acad Child Psychiatry 1981; 20: 281-91.
25. Lieb K, Reincke M, Riemann D, Voderholzer U. Sleep deprivation and growth-hormone secretion. Lancet 2000 356; 2096-7.
26. Chamlin SL, Mattson CL, Frieden IJ et al. The price of pruritus: Sleep disturbance and cosleeping in atopic dermatitis. Arch Pediatr Adolesc Med 2005; 159: 745-50.
27. Paller AS, McAlister RO, Doyle JJ, Jackson A. Perceptions of physicians and pediatric patients about atopic dermatitis, its impact, and its treatment. Clin Pediatr (Phila) 2002; 41: 323-32.
28. Fivenson D, Arnold RJ, Kaniecki DJ, Cohen JL, Frech F, Finlay AY. The effect of atopic dermatitis on total burden of illness and quality of life on adults and children in a large managed care organization. J Manag Care Pharm 2002; 8: 333-42.
29. Emerson RM, Williams HC, Allen BR. What is the cost of atopic dermatitis in preschool children ? Br J Dermatol 2001; 144: 514-22.
30. Verboom P, Hakkaart-Van L, Sturkenboom M, De Zeeuw R, Menke H, Rutten F. The cost of atopic dermatitis in the Netherlands: An international comparison. Br J Dermatol 2002; 147: 716-24.
31. Aziah MS, Rosnah T, Mardziah A, Norzila MZ. Childhood atopic dermatitis: a measurement of quality of life and family impact. Med J Malaysia 2002; 57: 329-39.
32. Warschburger P, Buchholz HT, Petermann F. Psychological adjustment in parents of young children with atopic dermatitis: Which factors predict parental quality of life ? Br J Dermatol 2004; 150: 304-11.
33. Ben-Gashir MA, Seed PT, Hay RJ. Are quality of family life and disease severity related in childhood atopic dermatitis ? J Eur Acad Dermatol Venereol 2002; 16: 455-62.
34. Balkrishnan R, Housman TS, Carroll C, Feldman SR, Fleischer AB. Disease severity and associated family impact in childhood atopic dermatitis. Pediatr Dermatol 2003; 20: 5-10.
35. Balkrishnan R, Housman TS, Grummer S et al. The family impact of atopic dermatitis in children: The role of the parent caregiver. Pediatr Dermatol 2003; 20: 5-10.
36. Torsten Z, Seth J, Orlow MD et al. Patient perspectives on the management of atopic dermatitis. J Allergy Clin Immunol (in press).
37. Charman CR, Morris AD, Williams HC. Topical corticosteroid phobia in patients with atopic eczema. Br J Dermatol 2000; 142: 931-6.
38. Beattie PE, Lewis-Jones MS. Parental knowledge of topical therapies used in the treatment of atopic dermatitis. Clin Exp Dermatol 2003; 28: 549-53.
39. Johnston GA, Bilbao RM, Graham-Brown RA. The use of complementary medicine in children with atopic dermatitis in secondary care in Leicester. Br J Dermatol 2003; 149: 566-71.
40. Broberg A, Kalimo K, Lindblad B, Swanbeck G. Parental education in the treatment of atopic eczema. Acta Dermato Venereol (Stockh) 1990; 70: 495-9.
41. Staab D, von Rueden U, Kehrt R et al. Evaluation of a parental training program for the management of childhood atopic dermatitis. Pediatr Allergy Immunol 2002; 13: 84-90.
42. Gieler U, Kohnlein B, Schauer U, Freiling G, Stangier U. Counseling of parents with children with atopic dermatitis. Hautarzt 1992; 43 (S11): 37-42 (in German).
43. Cork MJ, Britton J, Butler L, Young S, Murphy R, Keohane SG. Comparison of parent knowledge, therapy utilization and severity of atopic eczema before and after explanation and demonstration of topical therapies by a specialist dermatology nurse. Br J Dermatol 2003; 149: 582-9.
44. Ohya Y, Williams H, Steptoe A et al. Psychosocial factors and adherence to treatment advice in childhood atopic dermatitis. J Invest Dermatol 2001; 117: 852-7.
45. Koblenzer CS, Koblenzer PJ. Chronic intractable atopic eczema. Its occurrence as a physical sign of impaired parent-child relationships and psychologic developmental arrest: Improvement through parent insight and education. Arch Dermatol 1988; 124: 1673-7.
46. Absolon CM, Cottrell D, Eldridge SM, Glover MT. Psychological disturbance in atopic eczema: The extent of the problem in school-aged children. Br J Dermatol 1997; 137: 241-5.
47. Titman PS, Barker C, Smith CH. The psychological impact of chronic eczema on children and their families. Br J Dermatol 2001; 145 (S59): 128-9.
48. Herd RM. In: Williams HC, ed. Morbidity and Cost in Atopic Dermatitis. Cambridge University Press, 2000; pp. 88-9.
49. Collier J, MacKinlay D, Phillips D. Norm values for the Generic Children's Quality of Life Measure (GCQ). Qual Life Res 2000; 9: 617-23.
50. Patrick DL, Bush JW, Chen MM. Methods for measuring levels of well-being for a health status index. Health Serv Res 1973; 8: 228-45.
51. Eiser C, Morse R. Quality of life measures in chronic diseases of childhood. Health Technol Assess 2001; 5: 31, 35, 37, 43, 143.
52. Annett RD, Bender BG, Lapidus J, Duhamel TR, Lincoln A. Predicting children's quality of life in an asthma clinical trial: What do children's reports tell us ? J Pediatr 2001; 139: 854-61.
53. Eiser C, Morse R. The measurement of quality of life in children: Past and future perspectives. J Dev Behav Pediatr 2001; 22: 248-56.
54. Clarke SA, Eiser C. The measurement of health-related quality of life (QOL) in paediatric clinical trials: A systematic review. Health Qual Life Outcomes 2004; 22: 66.
55. Eiser C, Morse R. Can parents rate their child's health-related quality of life? Results of a systematic review. Qual Life Res 2001; 10: 347-57.
56. Theunisson NCM, Vogels TGC, Koopman HM et al. The proxy problem: Child versus parent report in health-related quality of life research. Qual Life Res 1998; 7: 387-97.
57. Berth-Jones J, Finlay AY, Zaki I et al. Cyclosporin in severe childhood atopic dermatitis: A multicenter study. J Am Acad Dermatol 1996; 34: 1016-21.
58. Harper JI, Ahmed I, Barclay G et al. Cyclosporin for severe childhood atopic dermatitis: Short course versus continuous therapy. Br J Dermatol 2000; 142: 52-8.
59. Drake LMD, Prendergast M, Maher R et al. The impact of tacrolimus ointment on health-related quality of life of adult and paediatric patients with atopic dermatitis. J Am Acad Dermatol 2001; 44: S65-72.
60. Whalley D, Huels J, McKenna SP, van Assche D. The benefit of Pimecrolimus (Elidel, SDZ ASM 981) on parents' Quality of Life in the treatment of atopic dermatitis. Pediatrics 2002; 110: 1133-6.
61. Thomas KS, Armstrong S, Avery A et al. Randomised controlled trial of short bursts of a potent topical corticosteroid versus prolonged use of a mild preparation in children with mild or moderate atopic dermatitis. Brit Med J 2002; 324: 768.
62. Beattie PE, Lewis-Jones MS. A pilot study on the use of wet wraps in infants with moderate atopic eczema. Clin Exp Dermatol 2004; 29: 348-53.
63. Schiffner R, Schiffner-Rohe J, Landthaler M, Stolz W. Treatment of atopic dermatitis and impact on quality of life. Pharmacoeconomics 2003; 21: 159-79.
64. Lane DA. Utility, decision and quality of life. J Chron Dis 1987; 40: 585-9.
65. Stevens KJ, Brazier JE, McKenna SP, Doward LC, Cork MJ. The development of a preference-based measure of health in children with atopic dermatitis. Br J Dermatol 2005; 153: 372-7.
66. Lundberg L, Johannesson M, Silverdahl M, Hermansson C, Lindberg M. Quality of life, health-state utilities and willingness to pay in patients with psoriasis and atopic eczema. Br J Dermatol 1999; 141: 1067-75.
67. Aledan M, Gonzales M, Finlay AY. Utility measures for children with skin disease. J Eur Acad Dermatovenereol 2000; 14 (S1): 281 (Abstract).
68. Holme SA, Man I, Sharpe JL, Dykes PJ, Lewis-Jones MS, Finlay AY. The Children's Dermatology Life Quality Index: Validation of the Cartoon version. Br J Dermatol 2003; 148: 285-90.
69. Hongbo Y, Thomas CL, Harrison MA, Salek MS, Finlay AY. Translating the science of quality of life into practice: What do dermatology life quality index scores mean ? J Invest Dermatol 2005; 125: 659-64.
70. Kiebert G, Sorensen SV, Revicki D et al. Atopic dermatitis is associated with a decrement in health-related quality of life. Int J Dermatol 2002; 41: 151-8.
71. Ben-Gashir MA, Seed PT, Hay RJ. Are quality of life and diseases severity related in childhood atopic dermatitis ? J Eur Acad Dermatovenereol 2002; 16: 455-62.
72. Kunz B, Oranje AP, Labreze L, Stalder JF, Ring J, Taieb A. Clinical validation and guidelines for the SCORAD index: Consensus report of the European Task Force on Atopic Dermatitis. Dermatology 1997; 195: 10-9.
73. Cardiff Dermatology Website. http://www.dermatology.org.uk (accessed on 23 June 2006).
74. Chinn DJ, Poyner T, Sibley G. Randomised controlled trial of a single dermatology nurse consultation in primary care on the quality of life of children with atopic eczema. Br J Dermatol 2002; 146: 432-9.
75. Shum KW, Lawton S, Williams HC, Docherty G, Jones J. The British Association of Dermatologists audit of atopic eczema management in secondary care. Phase 3: Audit of service outcome. Br J Dermatol 2000; 142: 721-7.
76. Beattie PB, Lewis-Jones MS. An audit of the impact of a consultation with a paediatric dermatology team on quality of life in infants with atopic eczema and their families: Further validation of the Infants' Dermatitis Quality of Life Index and Dermatitis Family Impact score. Br J Dermatol 2006 (in press).
77. Lewis-Jones MS, Finlay AY, Hill G, Dykes PJ. The impact of atopic dermatitis on children and their families: A community study. Ann Dermatol Venereol 1998; 125 (S1): S62 (Abstract).
78. Balkrishnan R, Manuel J, Clarke J, Carroll CL, Housman TS, Fleischer AB Jr. Effects of an episode of specialist care on the impact of childhood atopic dermatitis on the child's family. J Pediatr Health Care 2003; 17: 184-9.
79. McKenna SP, Doward LC, Niero M, Erdman R. Development of needs-based quality of life instruments. Value Health 2004; 7 (Suppl. 1): S17-21.
80. Meads DM, McKenna SP, Kahler K. The quality of life of parents of children with atopic dermatitis: Interpretation of PIQoL-AD scores. Qual Life Res 2005; 14: 2235-45.
81. Chaudhry S, Moss C, Gilmour E. Quality of life measurements in children with atopic eczema from different ethnic groups in Birmingham. Br J Dermatol 2001; 145 (S59): 45 (Abstract).