Coping with the Burden of Disease
Sarah L. Chamlin
The Ann and Robert H. Lurie Children's Hospital of Chicago and Northwestern University, Feinberg School of Medicine, Chicago, IL, USA
Search for more papers by this authorSarah L. Chamlin
The Ann and Robert H. Lurie Children's Hospital of Chicago and Northwestern University, Feinberg School of Medicine, Chicago, IL, USA
Search for more papers by this authorPeter Hoeger
Search for more papers by this authorVeronica Kinsler
Search for more papers by this authorAlbert Yan
Search for more papers by this authorJohn Harper
Search for more papers by this authorArnold Oranje
Search for more papers by this authorChristine Bodemer
Search for more papers by this authorMargarita Larralde
Search for more papers by this authorVibhu Mendiratta
Search for more papers by this authorDiana Purvis
Search for more papers by this authorSummary
Paediatric skin disease may impart a psychological, physical and functional burden on afflicted children and their families. Much of the work on this burden of skin disease, both quantitative and qualitative, has been focused on atopic dermatitis, acne and infantile haemangiomas. Of note, burden varies based on the age of the affected child and the type of skin disease. Valuable resources for coping with disease burden include patient advocacy groups and psychology services.
References
- VanBeek M, Beach S, Braslow JB et al. Highlights from the report of the working group on ‘core measure of the burden of skin disease’. J Invest Dermatol 2007; 127: 2701–6.
- Chren MM. Measurement of vital signs for skin diseases. J Invest Dermatol 2005; 125: viii–ix.
- Lewis-Jones MS, Finlay AY. The Children's Dermatology Life Quality Index: initial validation and practical use. Br J Dermatol 1995; 132: 942–9.
- Smidt AC, Lai JS, Cella D et al. Development and validation of Skindex-Teen, a quality-of-life instrument for adolescents with skin disease. Arch Dermatol 2010; 146(8): 865–9.
- Lawson V, Lewis-Jones MS, Finlay AY et al. The family impact of childhood atopic dermatitis: the Dermatitis Family Impact Questionnaire. Br J Dermatol 1998; 138: 107–13.
- Lewis-Jones MS, Finlay AY, Dykes PJ. The Infant's Dermatitis Quality of Life Index. Br J Dermatol 2001; 144: 104–10.
- 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.
- McKenna SP, Whalley D, Dewar AL et al. International development of the Parents’ Index of Quality of Life in Atopic Dermatitis (PIQoL). Qual Life Res 2005; 14(1): 231–41.
- Basra MKA, Sue-Ho R, Finlay AY. The family Dermatology Life Quality Index: measuring the secondary impact of skin disease. Br J Dermatol 2007; 156: 528–38.
- Magin PJ, Pond CD, Smith WT et al. A cross-sectional study of psychological morbidity in patients with acne, psoriasis and atopic dermatitis in specialist dermatology and general practices. J Eur Acad Dermatol Venereol 2008; 22: 1435–44.
- Higgins ET. Self-discrepancy: a theory relating to self and affect. Psychol Rev 1987; 94: 319–40.
- Dalgard F, Gieler U, Holm JO et al. Self-esteem and body satisfaction among late adolescents with acne: results from a population survey. J Am Acad Dermatol 2008; 59: 746–51.
- Magin P, Adams J, Heading G et al. Psychological sequelae of acne vulgaris: results of a qualitative study. Can Fam Physician 2006; 52: 978–9.
- Magin P, Adams J, Heading G et al. Experiences of appearance-related teasing and bullying in skin disease and their psychological sequelae: results of a qualitative study. Scand J Caring Sci 2008; 22: 430–6.
- Gupta MA, Gupta AK. Depression and suicidal ideation in dermatology patients with acne, alopecia areata, atopic dermatitis and psoriasis. Br J Dermatol 1998; 139: 846–50.
- Laughter D, Istvan JA, Tofte SJ et al. The prevalence of atopic dermatitis in Oregon schoolchildren. J Am Acad Dermatol 2000; 43: 649–55.
- Chamlin SL, Frieden IJ, Williams ML et al. The effects of atopic dermatitis on young American children and their families. Pediatrics 2004; 114: 607–11.
- Hon KL, Pong NH, Poon TC et al. Quality of life and psychosocial issues are important outcome measures in eczema treatment. J Dermatol Treat 2015; 26: 83–9.
- Dahl RE, Bernhisel-Broadbent J, Scanlon-Holdford S et al. Sleep disturbances in children with atopic dermatitis. Arch Pediatr Adolesc Med 1995; 149: 856–60.
- Daud LR, Garralda ME, David TJ. Psychosocial adjustment in preschool children with atopic eczema. Arch Dis Child 1993; 69: 70–6.
- Absolon CM, Cottrell D, Eldridge SM et al. Psychological disturbance in atopic eczema: the extent of the problem in school-aged children. Br J Dermatol 1997; 137: 241–5.
- Schmitt J, Romanos M, Schmitt et al. Atopic eczema and attention-deficit/hyperactivity disorder in a population-based sample of children and adolescents. JAMA 2009; 301: 724–6.
- Moldofsky H. Evaluation of daytime sleepiness. Clin Chest Med 1992; 3: 417–25.
- Romanos M, Gerlach M, Warnke A, Schmitt J. Association of attention-deficit/hyperactivity disorder and atopic eczema modified by sleep disturbance in a large population-based sample. J Epidemiol Community Health 2010; 147(8): 967–70.
- Tsai JD, Chang SN, Mou CH et al. Association between atopic disease and attention-deficit/hyperactivity disorder in childhood: a population-based case-control study. Ann Epidemiol 2013; 23(4): 185–8.
- Strom MA, Fishbein AB, Paller AS, Silverberg JL. Association between AD and attention deficit hyperactivity disorder in US children and adults. Br J Dermatol 2016; 175: 920–9.
- Smith JA. The impact of skin disease on the quality of life adolescents. Adolesc Med State Art Rev 2001; 12: 343–53.
- Yaghmaie P, Koudelka CW, Simpson EL. Mental health comorbidity in patients with atopic dermatitis. J Allergy Clin Immunol 2013; 131: 428–33.
- Halvorsen JA, Lien L, Dalgard F et al. Suicidal ideation, mental health problems, and social function n adolescents with eczema: a population-based study. J Invest Dermatol 2014; 134: 1847–54.
- Warschburger P, Buchholz HTh, 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.
- 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.
- Charman CR, Morris AD, Williams HC. Topical corticosteroid phobia in patients with atopic eczema. Br J Dermatol 2000; 142: 931–6.
- 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.
- Pustisek N, Zivkovic MV, Situm M. Quality of life in families with children with atopic dermatitis. Pediatr Dermatol 2016; 33(1): 28–32.
- Smithard A, Glazebrook C, Williams HC. Acne prevalence, knowledge about acne and psychological morbidity in mid-adolescence: a community-based study. Br J Dermatol 2001; 145: 274–9.
- Rapp DA, Brenes GA, Feldman SR et al. Anger and acne: implications for quality of life, patient satisfaction and clinical care. Br J Dermatol 2004; 151: 183–9.
- Jowett S, Ryan T. Skin disease and handicap: an analysis of the impact of skin conditions. Soc Sci Med 1985; 20: 425–9.
- Wu SF, Kinder BN, Trunnell TN et al. Role of anxiety and anger in acne patients: a relationship with the severity of the disorder. J Am Acad Dermatol 1988; 18: 325–33.
- Krowchuk DP, Stancin T, Keskinen R et al. The psychosocial effects of acne on adolescents. Pediatr Dermatol 1991; 8: 332–8.
- Nguyen CM, Koo J, Cordoro KM. Psychodermatologic effects of atopic dermatitis and acne: a review on self-esteem and identity. Pediatr Dermatol 2016; 33(2): 129–35.
-
Thomas DR. Psychosocial effects of acne. J Cutan Med Surg 2005; 8: 3–6.
10.1007/s10227-004-0752-x Google Scholar
- Rigopoulos D, Gregoriou S, Ifandi A et al. Coping with acne: beliefs and perceptions in a sample of secondary school Greek pupils. J Eur Acad Dermatol Venereol 2007; 21: 806–10.
- Chiu A, Chon SY, Kimball AB. The response of skin disease to stress. Arch Dermatol 2003; 139: 897–900.
- Salek MS, Khan GK, Finlay AY. Questionnaire techniques in assessing acne handicap: reliability and validity study. Qual Life Res 1996; 5: 131–8.
- Motley RJ, Finlay AY. How much disability is caused by acne? Clin Exper Dermatol 1989; 14: 194–8.
- Martin AR, Lookingbill DP, Botek A et al. Health-related quality of life among patients with facial acne – assessment of a new acne-specific questionnaire. Clin Exper Dermatol 2001; 26: 380–5.
- Gleason T. Summer's strawberry. J Am Acad Dermatol 2004; 51: S53–4.
- Pope AW, Ward J. Self-perceived facial appearance and psychosocial adjustment in preadolescents with craniofacial anomalies. Cleft Palate-Craniofac J 1997; 34: 396–401.
- Drotar D, Baskiewicz A, Irvin N et al. The adaptation of parents to the birth of an infant with a congenital malformation: a hypothetical model. Pediatrics 1975; 56(5): 710–17.
- Tanner JL, Dechert, MP, Frieden IJ. Growing up with a facial hemangioma: parent and child coping and adaptation. Pediatrics 1998; 101: 446–52.
- Tomasgard M, Metz WP. The vulnerable child syndrome revisited. Dev Behav Pediatr 1995; 16: 47–53.
- Horton KM, Renooy L, Forrest CR. Patients with facial difference: assessment of information and psychosocial support needs. Uni Toronto Med J 2000; 78: 8–11.
- Dieterich–Miller CA, Cohen BA, Liggett J. Behavioral adjustment and self-concept of young children with hemangiomas. Pediatr Dermatol 1992; 9: 241–5.
- Williams EF 3rd, Hochman M, Rodgers BJ et al. A psychological profile of children with hemangiomas and their families. Arch Facial Plast Surg 2003; 5: 229–34.
- Hoornweg MJ, Grootenhuis MA, van der Horst C. Health related quality of life and impact of haemangiomas on childrens and their parents. J Plast Reconstr Aesthet Surg 2009; 62(10): 1265–71.
- Zweegers J, van der Vleuten CJM. The psychosocial impact of an infantile haemangioma on the children and their parents. Arch Dis Child 2012; 97: 922–6.
- Cohen-Barak E, Rozenman D, Adir AS. Infantile hemangiomas and quality of life. Arch Dis Child 2013; 98: 676–9.
- Chamlin SL, Mancini AJ, Lai JS et al. Development and validation of a quality-of-life instrument for infantile hemangiomas. J Invest Dermatol 2015; 135: 1533–9.
- Boccara O, Meni C, Leaute-Labreze C et al. Haemangioma family burden: creation of a specific questionnaire. Acta Derm Venereol 2015; 95; 78–82.
- Mancini AJ, Kaulback K, Chamlin SL. The socioeconomic impact of atopic dermatitis in the United States: a systematic review. Pediatr Dermatol 2008; 25: 1–6.
- Kübler-Ross E. On Death and Dying. New York: Simon and Schuster, 1969.
- Engel GL. The need for a new medical model a challenge for biomedicine. Science 1977; 196: 129–36.
- Wallander JL, Varni JW. Effects of pediatric chronic physical disorders on child and family adjustment. J Child Psychol Psychiatry 1998; 39: 29–46.
- Thompson RJ Jr. Coping with the stress of chronic childhood illness. In: AN O'Quinn (ed.) Management of Chronic Disorders of Childhood. Boston: G.K. Hall, 1985: 11–41.
- Dennis H, Rostill H, Reed J et al. Factors promoting psychological adjustment to childhood atopic eczema. J Child Health Care 2006; 10: 126–39.
- Harvey D, Greenway P. How parent attitudes and emotional reactions affect their handicapped child's self-concept. Psychol Med 1982; 12: 357–70.
- Folkman S, Lazarus RS. An analysis of coping in a middle-aged community sample. J Health Soc Behav 1980; 21: 219–39.
- Holahan CJ, Moos RH. Risk, resistance, and psychological distress: a longitudinal analysis with adults and children. J Abnormal Psychol 1987; 96: 3–13.
- Tan JKL, Vasey K, Fung KY. Beliefs and perceptions of patients with acne. J Am Acad Dermatol 2001; 44: 439–45.
- Pittet I, Berchtold A, Akre C et al. Are adolescents with chronic conditions particularly at risk of bullying? Arch Dis Child 2010; 95: 711–16.
- Goh C, Lane AT, Bruckner AL. Support groups for children and their families in pediatric dermatology. Pediatr Dermatol 2007; 24: 302–5.
- Sawin K, Lannon S, Austin J. Camp experience and attitude towards epilepsy. J Neurosci Nurs 2001; 33: 57–64.
- Reddy KK, Reddy KK. Camp discovery: fifteen magical years. J Am Acad Dermatol 2007; 56: 677–8.
-
Epstein I, Stinson J, Stevens B. The effects of camp on health-related quality of life in children with chronic illness: a review of the literature. J Pediatr Oncol 2005; 22: 89–103.
10.1177/1043454204273881 Google Scholar