PEDIATRICS Vol. 114 No. 3 September 2004, pp. 607-611 (doi:10.1542/peds.2004-0374)
Effects of Atopic Dermatitis on Young American Children and Their Families
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,,||,¶
* Division of Pediatric Dermatology, Children’s Memorial Hospital, Chicago, Illinois
Department of Dermatology, University of California, San Francisco, California
Department of Pediatrics, University of California, San Francisco, California
|| Department of Medicine, University of California, San Francisco, California
¶ Dermatology Service and the Health Services Research Enhancement Award Program, San Francisco Veterans Affairs Medical Center, San Francisco, California
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ABSTRACT |
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 TOP ABSTRACT METHODSRESULTSDISCUSSIONCONCLUSIONREFERENCES |
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Objective. The psychologic, physical, and social impact of atopic dermatitis is complex and varies among children of different ages, and the effects of atopic dermatitis on the quality of life of very young American children and their families are not well understood. This study was conducted to document these effects of atopic dermatitis on young children and their families.
Methods. Directed focus sessions were performed with parents of 26 young children with atopic dermatitis and 6 expert clinicians. Specific mentions of the ways in which atopic dermatitis affected the children and parents were reviewed, rank ordered, and categorized according to similarity in content. The categories were examined to determine the domains represented, and the domains were used to compose a conceptual framework of all of the ways that atopic dermatitis affects children and their families.
Results. Parents and experts mentioned a total of 181 specific quality-of-life effects. A conceptual framework, developed from the 181 effects, contains the domains of physical health, emotional health, physical functioning, and social functioning; each domain includes effects on both the child and the parents.
Conclusions. Atopic dermatitis greatly affects the quality of life of afflicted children and their families. The comprehensive conceptual framework summarizes the ways in which atopic dermatitis affects the quality of life in young American children. This conceptual framework forms the basis from which quality-of-life instruments can be developed.
Key Words: atopic dermatitis • quality of life • child-family relationships
Atopic dermatitis is the most common inflammatory skin disease in children, affecting 17% of children in the United States.1 Atopic dermatitis most often begins in infancy or early childhood, with 
90% of cases appearing in the first 5 years of life, a critical period for psychosocial development. Both physiologic and psychologic abnormalities have been documented in young children with atopic dermatitis and in their families.
Psychosocial abnormalities in preschool children with atopic dermatitis include behavioral problems, excessive dependency, clinginess, and fearfulness. In addition to daytime scratching, sleep in children with atopic dermatitis is marked by overall reduced sleep efficiency with frequent awakenings,2 which for many children persist even during disease remission.3 Other reported sleep-related abnormalities include difficulty falling asleep, diminished total sleep, greater difficulty awakening, daytime tiredness, and irritability. Difficulty falling asleep and night awakenings in children with atopic dermatitis correlate with behavior and discipline problems.4
Coincident with its impact on the child, childhood atopic dermatitis has a social, emotional, and financial impact on families.5 Mothers of young children with atopic dermatitis report a decrease in employment outside the home, poor social support, stress about parenting, and difficulty with discipline.6 Parents of children with atopic dermatitis have many worries related to disease triggers and medications use, including fear of using topical corticosteroids.7
Although the effects of atopic dermatitis on children and their families have been studied qualitatively and quantitatively outside the United States,8–10 the specific impact of atopic dermatitis on very young American children and their families has not been investigated thoroughly. Because of the paucity of information on a common disorder, particularly in children in the United States, this study was designed to determine and document systematically and comprehensively the ways in which atopic dermatitis affects the lives of young children and their families.
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METHODS |
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Study Participants
Parents of young children (aged birth to 6 years) with atopic dermatitis were recruited consecutively from Dermatology Clinics at the University of California, San Francisco after the diagnosis of atopic dermatitis was confirmed by 1 of the investigators. Recruitment was not based on severity of skin disease. Demographic characteristics of the children are described in Table 1. Consent was obtained after the clinic visit and before the interview. Parents who were unable to speak and read English were excluded. Parents of children with a symptomatic comorbid medical condition that required daily or frequent medical care (eg, severe asthma, seizures, developmental delay) were also excluded. Of note, none of the recruited parents refused to participate, and, indeed, most were eager to participate. In addition, 6 experts (5 pediatric dermatologists and 1 general dermatologist) with extensive experience in caring for children with atopic dermatitis were interviewed.
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Focus Sessions
Directed focus sessions were conducted by 1 of the investigators (S.L.C.) to document all of the ways in which atopic dermatitis affected these children and their parents. The open-ended questions that were composed to generate discussions with parents and experts are listed in Table 2. Parents of 26 children with atopic dermatitis (23 total interviews) were recruited for participation until no new data were being collected. All parent interviews and 3 of the 6 expert interviews were conducted in person. Three of the experts were interviewed over the telephone. The interviews ranged in length from 14 to 45 minutes (mean: 27 minutes). The focus session interviews were audiotaped and transcribed. Notes were also taken during the interviews to supplement the audiotapes and transcriptions.
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Statistical Analysis
Qualitative analysis was performed on the transcribed data and investigator notes. All mentions (quotes) made by parents or experts were coded by 2 of the investigators (S.L.C. and M.M.C.) and categorized for similarity in content. Domains or themes were developed from the categorized mentions. The categories were used to develop the conceptual framework by consensus of the authors (Fig 1). In addition, an expert group reviewed in detail the conceptual framework and the mentions within the domains. This review was performed to validate further the content of the framework and the framework itself.
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RESULTS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONREFERENCES |
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Parents and experts mentioned a total of 181 specific quality-of-life effects. Effects mentioned by at least 20% of families and experts are shown in Table 3. All effects were categorized into 4 domains (physical health, emotional health, physical functioning, and social functioning) and were designated as an effect on the child or the parent. The conceptual framework is shown in Fig 1. Examples of effects in each of the 4 domains are given below. Selected direct quotes from parents are included.
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Domain 1: Physical Health
Sleep disruption and itching/scratching were the most prevalent physical symptoms for affected children. Sleep problems for the child were reported in 22 of the 23 parent interviews and in all of the expert interviews, and itching and scratching were reported in all interviews. Parents reported that their children have difficulty falling asleep and staying asleep as a result of the scratching. The physical symptoms of painful and bleeding skin were also reported as effects on children. "He scratches throughout the night, disfiguring himself. His sheets are bloody." "She is restless at night, can’t sleep. She scratches all night."
With respect to effects on physical health of the parents, sleep deprivation, exhaustion, and tiredness were common. The sleep of parents was sacrificed to keep the child asleep. Although 16 of the 23 families described co-sleeping as a way to improve the sleep of their child, many stated that this arrangement disrupted their own sleep. "One of us stays awake to keep her from scratching. We do shift work at night." "It is a necessity to have her in our bed to feel her moving and stop her scratching."
Domain 2: Emotional Health
The most commonly reported emotional symptoms for the child included irritability, fussiness, and increased crying. Parents attributed crying and discomfort to pruritus. "He cries a lot, rubs his face, whines." "The scratching is intense. He is a crying uncomfortable infant." "She is miserable. Nothing you can do will comfort her." "He is screaming and mad when scratching."
Parents report significant personal emotional effects. Guilt or self-blame was described in 12 of the 23 parent interviews. Many parents, particularly those with a history of atopy themselves, felt personally responsible for their children’s disorder. "I am worried about what I ate during pregnancy to cause this." "I blame myself for passing it on to him." "When my husband sees dried blood on her face, he cries."
In addition to parents’ blaming themselves, parents blamed their spouses and also felt as though relatives were blaming them and their spouses. Parents also feel responsible for exposing their children to foods or environmental allergens that they believed caused or worsened the dermatitis. "I blame my husband; he has asthma." "My sister blames me. She said, ‘How could you have a child like this?’ " "I feel like I am not doing the right thing for her skin; I am to blame." "It’s all my fault. I kept her in too much. She gets colds easily. I tried too much to keep her away from everything."
The reaction of the public, friends, and relatives was emotionally stressful for parents in 11 of the 23 family interviews. Adverse reactions were attributed to both the appearance of the child and fear of contagion. Parents described accusations of child abuse or neglect from strangers. Parents reported strangers’ offering unsolicited advice as a common occurrence. Reactions of strangers evoked feelings of anger, sadness, helplessness, embarrassment, frustration, and disappointment. "Strangers and relatives worry about open wounds being contagious. Even my sister worries about touching him and sharing a crib with her children." "Everyone wants to play with our other child. They stay away from this infant. Parents tell their kids to stay away." "Other parents grab their child away from mine." "The dentist asked if it was contagious. He put on double gloves. I’m looking for another dentist." "A stranger reacted that my child was not taken care of. This made me angry." "A stranger told me that he’s perfect except for his skin, and herbal tea would treat this." "I feel embarrassed about her appearance, and cover her face and head with hats."
Many parents described adverse experiences with relatives. Negative comments from relatives made parents doubt their parenting skills. "We get lots of advice from grandparents. They try to help but make me feel inadequate." "I have learned to accept this, but relatives make me feel incompetent." "They think we did something wrong to cause this. I think my wife ate something wrong to cause it."
Worry was a common emotion expressed by parents. They worried about medication side effects, diet and environmental allergens as exacerbating factors, costs of care, and their child’s psychosocial development. "I am limiting my diet and her diet, and no improvement" (breastfeeding mother). "I constantly put stuff on her body; nothing worked. I felt I was poisoning her." "I’m worried that the medicines will cause brain damage." "I am worried that the hydrocortisone will thin the skin and change the color." "This may affect my decision to go back to work. If I don’t go back, we won’t have good insurance."
Specific concerns about psychosocial development included the fear of future social isolation and the development of poor self-esteem. "I want her to be normal, whatever normal is." "I am worried about him being shy around other kids." "I want him to be accepted by others." "I’m worried about other children not wanting to play with him at school when he is older."
Parental sadness and crying was mentioned in 10 of the interviews.
"I’m sad. How come it’s my son?" "We picked up the wrong kid at the hospital." "She doesn’t have infant skin. She has dry skin. Why me? Everyone wants a perfect infant." "I miss touching his face because of his eczema. I’m sad if we don’t want to touch his face and head."
Six of the 23 parents interviewed stated that having 1 child with atopic dermatitis adversely affected their decision to have another child. "I don’t want the next one to have this."
Domain 3: Physical Functioning
Because of their worry about factors that may exacerbate the dermatitis, many parents restricted their children from swimming or playing outdoors. Play in the bath was also commonly limited. "I won’t let her play in the backyard, sandboxes, or swim." "We have stayed in because of the heat. Heat makes it more inflamed." "It’s not just a bath. It’s a treatment." "Bath time is not playtime. It’s work."
Covering or holding a child’s hands to prevent scratching was common practice in this patient population, and parents expressed concern about interrupting normal developmental activities by this restriction of hand movement. Interrupted play as a result of constant and intense pruritus was described. "I have to hold him all of the time. I can’t drive because I have to hold his hands to keep him from scratching." "He gets angry when he has to stop playing to scratch."
Many families noted that they avoided taking photographs of their child. "I am being cheated out of part of motherhood. I don’t want to take pictures."
Missed time from work was a complaint in 13 of the families, and 4 mothers choose to stay home and not return to work after maternity leave because of their children’s disease. Parents were reluctant to leave their children with relatives, child care, or babysitters. Moreover, they had difficulty finding child care that would comply with the medication regimen. Families were less likely to spend time outside their homes, and 10 families stated that they stayed home more because of their child’s skin disease. "I fear that day care won’t work. They won’t be able to take care of her." "He hinders our ability to do things on the weekends. We have a loss of freedom." "We avoid family picnics and work network events."
Domain 4: Social Functioning
Twelve of the 23 parents and 3 of the 6 experts reported that other adults and children avoided contact or playing with atopic children, most often for fear of a contagion. "If you don’t stop scratching, no one is going to want to play with you."
A feeling of social isolation and staying home more to avoid unwanted and anxiety-producing advice and negative comments from extended family and strangers was described. Parents described blame, conflict, and poor support from their extended families and friends as a result of having a child with atopic dermatitis. Unsolicited advice from family and friends regarding medications and diet were the most common specific items mentioned. Relatives often caused parents to fear medication side effects and worry about diet as causes of atopic dermatitis. Limiting interactions with family and friends was a way to protect themselves and their child from these additional stressors.
Eight parents reported dissatisfaction or frustration with medical treatments or physicians. "Our pediatrician is not experienced enough with this to be our pediatrician. We were told that all infants have rashes." "We have seen many doctors and expect relief. We feel helpless because we are already seeing a dermatologist." "Our pediatrician was reluctant to refer us to a dermatologist. I shouldn’t have to convince a pediatrician to refer us to a specialist."
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DISCUSSION |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONREFERENCES |
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This study documents the significant physical, emotional, and functional impact of atopic dermatitis on young American children and their families. Families not only need to address the physical symptoms that their child is experiencing but also must cope with complex emotional effects and far-reaching lifestyle limitations imposed by this disease. In addition, the adverse reactions and advice from relatives and strangers become a constant reminder of the disease and a source of guilt and frustration to many parents.
Of particular note were the sleep problems described by 22 of the 23 families, a finding consistent with previous reports. Although 10% to 30% of all children experience sleep difficulties in the first few years of life,11 sleep abnormalities are much more prevalent in children with atopic dermatitis.2 The sleep abnormality documented in children with atopic dermatitis is a disorder of initiating and maintaining sleep and is marked by frequent nighttime awakenings. Associations, habits, and self-comforting behaviors influence the development of sleep patterns in young infants and children. Hence, children with atopic dermatitis may develop chronic, behavior-based sleep problems as a result of the chronic and recurrent course of their skin disease. The vast majority of parents in the focus sessions described sleep dysfunction in their children and discussed their attempts to manage this problem. Co-sleeping, reported by 16 of the 23 interviewed families, was the most common strategy used to improve the sleep of the children. This prevalence (70%) of co-sleeping in this cohort was much greater than the reported rate of 13% in the United States.12 Co-sleeping behavior becomes habitual for some children and families in this population and may actually perpetuate the child’s sleep disturbance beyond the time of disease flare.13 In addition, nighttime awakening unassociated with scratching (another behavior-based sleep problem) may persist when the dermatitis is in remission.3
Parental sleep deprivation and exhaustion was a common theme in the focus sessions, and for some parents, these effects may be partially attributable to co-sleeping. Parents of children with atopic dermatitis may reason that bringing the child into their own bed will allow them to prevent the awakening episodes by stopping or preventing scratching, and many parents hold the child’s hands throughout the night. These practices lead to sleep disruption and sleep deprivation for 1 or both parents. The increased prevalence of co-sleeping in this cohort may partially be attributable to the increased number of Asian families interviewed, because co-sleeping is more prevalent in Asian families.12 Additional investigation of the prevalence and impact of co-sleeping in young children with atopic dermatitis is indicated.
Notably, more than half of the effects on the children were directly or indirectly related to puritus. Control of this symptom with an aggressive regimen of topical anti-inflammatory medications and nighttime sedating antihistamines may decrease these effects.
The interviewed population was recruited from a tertiary referral practice, and the dermatitis of the children in such a practice is more severe than that of most affected children. Severity of skin disease was not measured in this study, because the relationship between quality of life and disease severity is complex and often not strong, and the domains of quality-of-life effects described by these parents and experts likely apply to children who are less severely affected.14 Also, this cohort included more Asian families than in the general population, likely attributable in large part to the increased prevalence and/or severity of atopic dermatitis in Asian children.15 The predominance of Asian families may also reflect the ethnicity of the population in San Francisco and the surrounding areas. The ways in which atopic dermatitis affected children and their parents did not vary between races, however. Thus, these qualitative findings summarized in the conceptual framework can enrich the understanding of this complex subject, help create future research hypotheses, and form the basis for the development of accurate survey tools.16
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CONCLUSION |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONREFERENCES |
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Quality-of-life effects are both disease and age specific. Therefore, to comprehensively define these effects, this qualitative investigation was designed to focus uniquely on children who were younger than 6 years and had atopic dermatitis. The impact on emotional health was the predominant effect in this interviewed population. Previous similar investigations and quality-of-life measures have underestimated the emotional impact of atopic dermatitis on both affected children and their parents.8–10 Hence, age-specific measures of quality of life that emphasize emotional health in young children with atopic dermatitis should be developed. The conceptual framework proposed provides a comprehensive understanding of the ways in which atopic dermatitis affects the quality of life of young children and their families and forms the basis for such a measure.
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ACKNOWLEDGMENTS |
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This study was supported by a Society for Pediatric Dermatology Research grant and an American Skin Association Categorical Disease grant.
The experts interviewed for this study were Dr Ilona Frieden, Dr Mary Williams, Dr Alfred Lane, Dr Anne Lucky, Dr Renee Howard, and Dr Harold Roth.
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FOOTNOTES |
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Accepted Mar 4, 2004.
Reprint requests to (S.L.C.) 2300 Children’s Plaza, Box 107, Chicago, IL 60614. E-mail: schamlin{at}childrensmemorial.org
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PEDIATRICS (ISSN 1098-4275). ©2004 by the American Academy of Pediatrics
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