Atopic dermatitis is associated with significant patient burden, with impacts from symptoms and visible physical manifestations of the disease. Consequences include detrimental effects on quality of life (QoL), sleep, self-esteem, interpersonal relationships, participation in leisure and sports, and attendance or performance at school or work. Patients also spend a significant amount of time on treatments and care. Worsening severity of disease appears to be associated with a higher risk of impaired QoL, and pharmacologic and educational interventions that improve disease severity appear to, for the most part, simultaneously improve QoL.
Key points
- •
Patient burden in atopic dermatitis (AD) is significant and is comparable to other dermatoses without systemic involvement.
- •
Itch and pain are the most common symptoms in AD, and can have pronounced detrimental effects on quality of life (QoL) and sleep in patients with AD.
- •
Disease impacts include work and leisure limitations, difficulties in interpersonal relationships, and time lost to management of the disease.
- •
Most studies demonstrate a significant association between increasing disease severity and worsening impact on QoL.
- •
Both pharmacologic and educational interventions that improve disease severity appear to simultaneously improve QoL.
Introduction
Patients with atopic dermatitis (AD) experience symptoms and changes in skin appearance that can have significant impacts on physical and psychosocial health. The resulting negative effects on quality of life (QoL), relationships, and work or school performance can be overwhelming.
Although most cases will resolve before adulthood, AD is often persistent into and can begin in adulthood, resulting in a lifetime patient burden that is one of the largest among diseases worldwide. In the 2010 Global Burden of Disease report, 267 diseases were assessed using years lived with disability (YLD). This summary measure is calculated using the prevalence of disease-associated health sequelae multiplied by disability weights to incorporate the extent and duration of the impacts of a disease. Eczema had the 25th highest YLD of all diseases, and the highest among all skin diseases (note: we use the less-specific term “eczema” here, as that is what is used in the primary sources).
To address the significant patient burden of AD, clinicians need to understand the main contributors to impaired QoL, possible predictors of more severe impacts, and the effects of different interventions.
Introduction
Patients with atopic dermatitis (AD) experience symptoms and changes in skin appearance that can have significant impacts on physical and psychosocial health. The resulting negative effects on quality of life (QoL), relationships, and work or school performance can be overwhelming.
Although most cases will resolve before adulthood, AD is often persistent into and can begin in adulthood, resulting in a lifetime patient burden that is one of the largest among diseases worldwide. In the 2010 Global Burden of Disease report, 267 diseases were assessed using years lived with disability (YLD). This summary measure is calculated using the prevalence of disease-associated health sequelae multiplied by disability weights to incorporate the extent and duration of the impacts of a disease. Eczema had the 25th highest YLD of all diseases, and the highest among all skin diseases (note: we use the less-specific term “eczema” here, as that is what is used in the primary sources).
To address the significant patient burden of AD, clinicians need to understand the main contributors to impaired QoL, possible predictors of more severe impacts, and the effects of different interventions.
Measurement of patient burden in atopic dermatitis
Assessment of QoL is important in the management of AD as well as in clinical trials. Although QoL generally correlates with disease severity, they are not always closely related. This suggests that severity as assessed by clinicians does not fully capture the impact on patients. Therefore, when making therapeutic decisions, clinicians should take the QoL impact of a patient’s AD into account and not only rely on assessments of symptoms and signs. For example, a patient with mild disease based on physical examination may have significant impacts on QoL, necessitating more aggressive therapy than their clinical signs would suggest. QoL can be assessed informally with open-ended questions or questions targeting domains known to be affected by AD, such as those detailed in this review. It may be preferable, though, to include a formal assessment of QoL or patient burden in clinical encounters.
A variety of different measures have been used to assess QoL in patients with AD, including generic health, dermatology-specific, and AD-specific scales ( Table 1 ). These scales vary widely in target populations, domains assessed, and scoring algorithms. A recent systematic review of instruments used in AD trials identified 28 different QoL scales used in 45 trials. The heterogeneity of these tools makes it challenging to compare or pool findings of impaired QoL or treatment effects on QoL across different studies. The most commonly used scales include the Dermatology Life Quality Index (DLQI) and the Childhood DLQI (CDLQI), used in more than 40 studies of patients with AD. These scales include only 10 items, but cover a large breadth of variables, including symptoms and feelings, daily activities, leisure, work and school, personal relationships, and treatment. Although they target patients with skin disease, a concern is the lack of specificity for AD. An alternative patient-reported outcome measure is the 7-item Patient Oriented Eczema Measure (POEM), which is specific for signs and symptoms of AD, but does not assess impact on activities or psychosocial well-being. Taking only a few minutes to complete, this is an attractive standardized option for assessing and monitoring symptoms in clinical practice.
| Scale | Target Age | Length of Survey | Variables/Domains Assessed |
|---|---|---|---|
| General health scales | |||
| SF-36 | Adults | 36 items (10 min) | Physical functioning (10 items) Limitations due to physical health or emotional problems (7 items) Energy/fatigue (4 items) Emotional well-being (5 items) Social functioning (2 items) Pain (2 items) General health (5 items) |
| SF-12 | Adults (age >18 y) | 12 items (2–3 min) | Physical functioning (2 items) Limitations due to physical health or emotional problems (4 items) Energy/fatigue (1 item) Emotional well-being (1 item) Social functioning (1 item) Pain (1 item) General health (2 items) |
| EQ-5D | Adults | 6 items (5 min) |
|
| Dermatology-specific scales | |||
| DLQI | Adults | 10 items (2 min) | Symptoms and feelings (2 items) Daily activities (2 items) Leisure (2 items) Work and school (1 item) Personal relationships (2 items) Treatment (1 item) |
| CDLQI | Children 3–16 y old | 10 items (2 min) | Same as DLQI |
| Skindex-29 | Adults | 30 items (5 min) | Symptoms (7 items) Emotions (10 items) Functioning (12 items) |
| Atopic dermatitis–specific scales | |||
| IDQOL | Parents of infants younger than 4 y | 10 items (2–3 min) | Symptoms and mood (2 items) Sleep (2 items) Leisure (2 items) Daily activities (3 item) Treatment (1 item) |
| CADIS | Children <6 y and their parents | 45 items (6 min) | Child symptoms (7 items) Child activity limitations and behavior (9 items) Family and social function (9 items) Parent sleep (3 items) Parent emotions (17 items) |
Prevalence of symptoms and impaired quality of life in patients with atopic dermatitis
Itch and Pain
Itch perpetuates the dermatitis cycle and is a major component of the diagnostic criteria for AD. In an electronic questionnaire-based study of 304 patients with AD, 91% reported daily itch and 68% experienced itch more than 4 times each day. Most patients who experience itch find it difficult to live with. The National Family Opinion survey in 2001 included 559 respondents with a self-reported history of AD symptoms or diagnosis. In this population, 63.2% of respondents rated their itching (if present) as “very bothersome” or “extremely bothersome” in the past 12 months. In a pediatric cohort of 120 girls with AD, 95% were troubled by itching and scratching on the DLQI Questionnaire.
The impact of itch on QoL can be pronounced. In addition to correlations between itch and measures of QoL, itch has been correlated with psychological distress, fatigue, and feelings of helplessness. One of the most commonly reported consequences of itch is sleep disturbance. In a multicenter cross-sectional survey of 151 children and 172 adults with AD, 87.1% had difficulty falling asleep either frequently or nearly always, and 73.5% stated that itching frequently or nearly always woke them up from sleep.
Many patients with AD experience both pain and itch, and they can be difficult to separate. Some patients may perceive itch as painful, especially as itch intensity increases. In a survey of 1111 patients with AD and parents from 34 countries, more than 80% identified pain/soreness as being “quite important” or “very important” when asked about what factors influence their decision about what treatments are working.
Self-Esteem
Patients with AD may feel self-conscious or embarrassed about the appearance of their skin, with resulting fear and avoidance of going out in public. Classmates or coworkers who tease or bully patients may reinforce these fears.
A study of 336 university students in California explored self-perceived stigma due to skin diseases with an online survey. In 55 participants with a history of eczema, 21.8% reported being bullied or teased, 29.1% perceived being stared at by others, 21.8% had difficulty finding a romantic partner, and 25.5% reported that their eczema affected their social life. The strongest indicator of experiencing stigma was a feeling of awkwardness at being touched or seen by other people, reported in more than half of patients with eczema (58.2%). Fortunately, only a small percentage (3.6%) perceived discrimination at work or school.
In a telephone survey of 2002 patients and caregivers in 8 countries, 27% of adults reported a history of bullying; in children aged 8 to 17 it was even more prevalent at 39%. In the same population, 44% of adults were embarrassed about their appearance, and 53% were concerned about being seen in public.
Sleep Disturbance
Patients with AD may experience a variety of negative effects on sleep, including difficulty falling asleep, frequent awakenings, shorter overall duration of sleep, or sleep fragmentation. In 1 study of 148 children with AD and 2937 without, sleep duration was significantly shorter in those with severe dermatitis compared with controls (542 ± 67 vs 569 ± 62 minutes nightly, P = .02).
Sleep is often closely linked with pruritus, as patients may experience difficulty falling asleep or frequent awakenings with itch. In a polysomnography and actigraphy study, total scratching index was significantly correlated with percentage of body surface area affected with eczema (0.333, P = −.008), polysomnographic sleep efficiency (−0.56, P = .10) and Actigraph sleep efficiency (−0.52, P = .019). For this study, sleep efficiency was defined by the ratio of total sleep time to time in bed.
Poor sleep may lead to poor overall physical health and increased risk of injury, with supporting evidence from 3 US population-based studies. The first included 34,613 adults and reported that fatigue in patients with AD was associated with an increased risk of self-perceived fair or poor health (odds ratio [OR] 8.63, 95% confidence interval [CI] 7.15–10.43). Pooled data from 9 different population-based studies of 264,326 children reported increased odds of having a height less than the fifth percentile in adolescents aged 10 to 11 years old with AD and 0 to 3 nights of sufficient sleep per week. In a US population-based survey of 2484 patients with AD, adults with AD and fatigue (adjusted OR 2.61, 95% CI 1.91–3.55), daytime sleepiness (2.31, 1.69–3.16), or insomnia (2.62, 1.94–3.55) had higher rates of fractures and bone or joint injuries compared with those without AD.
Impact on Participation in Leisure and Sports
AD also can significantly impact participation in social and sport activities. Patients may feel reluctant to participate because of fear of stigmatization, teasing or bullying, or because of symptoms that worsen with heat or sweating. In a postal survey of 117 children with AD in the Netherlands, 31% to 35% reported avoiding social activities, and 35% to 43% reported avoiding sports activities. In this study, the motivation for avoiding these activities may have been due to feeling shame from peers, which was reported in 64% to 70% of participants.
Impact on Attendance and Performance at School and Work
AD can have direct and indirect effects on work or school performance. In US population-based surveys of 61,770 participants, eczema was associated with more than 50% increased odds of missing more than 5 days of work in each of 2010 (OR 1.59, 95% CI 1.34–1.88) and 2012 (OR 1.53, 95% CI 1.26–1.84). In that study, there was no correlation between severity of eczema and number of days missed, whereas in a smaller Canadian study of 76 patients, 43% with severe disease missed at least 1 day of work compared with 10% with mild disease and 5% with moderate disease.
Although those studies demonstrate increased time away from work or school among people with AD, there is no convincing evidence of an impact on school performance. In a cross-sectional survey of 3553 adolescents in Norway including 346 patients with AD, there was no significant increase in self-reports of “not thriving in school” despite a higher prevalence of mental health problems. These findings were supported in a birth cohort of 1865 children in the Netherlands, 51% of whom suffered from eczema. Review of teacher assessments of these participants at an age of 17 years did not reveal any association between presence or duration of AD and standardized tests or school performance.
Patients with AD are at higher risk of hand dermatitis, which may be especially impactful on school and work performance, given the need to use one’s hands in many activities and occupations. In a case control study of 783 participants, including 405 cases with a history of childhood AD, hand eczema was significantly more common in patients with AD (41.8% vs 13.4%, P <.01). In this population, 10% reported taking more than 7 days of sick leave due to eczema. Missed work can have many negative implications, including missed income and concerns of job security.
Impact on Career Choice
In addition to the immediate effects of AD on work productivity, long-term and broad effects are possible, including the avoidance of certain careers or employment opportunities. In a cross-sectional survey of 100 patients in Denmark, 38% reported occupation or job avoidance because of their eczema, including avoiding work in nursing, physiotherapy in pools, surgery, veterinary medicine, catering, cooking, farming, automobile repair, hair dressing, and cleaning. Restriction of such a large range of occupations could not only affect job and career satisfaction, but also prevent societal benefit from potential talented and successful workers.
Patients with AD also may perceive an impact on how they are treated by employers or coworkers, and the opportunities that they are offered. In 1088 adult patients surveyed in a multicenter study, 11% felt discriminated against because of their AD, and 14% believed that their career progression was hindered. More research would be helpful in determining if these impacts are related to disease severity or other patient demographics.
Impact on Relationships
AD has been demonstrated to have detrimental effects at home, impacting relationships with both family members and partners. A survey of 6518 adolescents aged 11 to 17 from 2003 to 2006 included 295 patients with AD, using KINDL-R(evised), which measures QoL in the past 7 days over 6 dimensions. In those with eczema, there was a significantly lower self-reported quality of relationships with family compared with adolescents without AD, with KINDL-R scores of 79.08 ± 0.91 compared with 82.12 ± 0.21 out of 100, P = .002. In another cross-sectional study of 1098 adults with AD, 21% found it difficult to form relationships with their partners because of their disease.
Time Spent Managing Atopic Dermatitis
Patients with AD and their families often devote a lot of time to their illness. Activities include medical appointments, possible emergency visits or hospital admissions, filling prescriptions, and applying topical treatments. In a study of 42 children with AD in Denmark in 2001, the total average time spent on treatment was estimated to be 62 minutes daily. Not only are these activities burdensome, but the time devoted to them is lost from other potential work or pleasure activities.
Effects of treatment on quality of life in patients with atopic dermatitis
Many AD treatment studies include QoL measures, and almost all report improvement of QoL measures that parallel response to treatment.
Several large studies have evaluated the impact of topical calcineurin inhibitors on QoL. According to these studies, treatment with topical tacrolimus and pimecrolimus improves QoL in parallel with improvements in disease severity in children and adults. One of the largest of these was a postmarketing surveillance study of patients with AD using pimecrolimus cream in 5665 participants. After 6 weeks of treatment, there was a 6-point average decrease in DLQI score in 1773 adults, and a 7.5-point average decrease in CDLQI score in 1438 children. These changes coincided with marked reduction in AD symptoms.
Similarly, the new topical PDE4 inhibitor, crisaborole, demonstrated improved CDLQI and DLQI scores in 797 children and 192 adults with mild to moderate disease by 47.5% and 54.0%, respectively, after only 4 weeks of twice-daily application of the 2% ointment. These changes were significantly better than patients randomized to vehicle, and correlated with improved severity scores. Trials of longer duration with active comparators are needed to define the full benefit of crisaborole.
Many trials evaluating the impact of systemic therapies on QoL have reported improvements in QoL that paralleled improvement in disease severity indices ( Table 2 ). These data are limited by mostly small sample sizes, heterogeneous outcome measures, and patient demographics. One of the largest studies reported the effect of 6 weeks of cyclosporine on DLQI in 54 patients. Interestingly, significant improvements in disease severity as measured by the SCORAD (Severity Scoring of Atopic Dermatitis) were associated with only very minor improvements in DLQI scores, which did not reach statistical significance.
Related posts:
Stay updated, free articles. Join our Telegram channel
Full access? Get Clinical Tree
