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Keywords:

  • atopic dermatitis;
  • occupational;
  • psoriasis;
  • psychosocial;
  • quality of life

Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. Evaluating the impact of skin disease on patients’ lives
  5. The impact of chronic skin diseases versus other chronic diseases
  6. Psychological impact
  7. Social impact
  8. Occupational impact
  9. Conclusion
  10. References

ABSTRACT:  Chronic skin diseases, particularly psoriasis and atopic dermatitis, have a negative impact on patients’ quality of life. Patients often experience significant psychological and social distress such as increased levels of depression and fear of stigma. Skin diseases can also impact patients’ occupational lives by causing them to miss work or be less productive. Quality of life instruments provide important information for healthcare professionals, the general public, and those involved in distribution of healthcare resources, which helps prevent chronic skin disease from being overlooked amidst other medical conditions.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. Evaluating the impact of skin disease on patients’ lives
  5. The impact of chronic skin diseases versus other chronic diseases
  6. Psychological impact
  7. Social impact
  8. Occupational impact
  9. Conclusion
  10. References

The impact of skin disease on patients’ lives is often overlooked by not only health policy makers and insurance companies, but also physicians and the general public. Because chronic skin diseases are often not life-threatening, attention and funds may be diverted to diseases that are perceived as more serious. However, the psychosocial and occupational impact of cutaneous illnesses is frequently comparable to, if not greater than, other chronic medical conditions. These negative effects can ultimately compromise overall quality of life. As stated concisely by Rapp et al., although not threatening to life itself, psoriasis (and other skin disease) can severely threaten the quality of life (1).

Many chronic skin diseases such as chronic urticaria (2), hidradenitis suppurativa (3), and vitiligo (4) have significant effects on quality of life. This article, however, will focus primarily on psoriasis and atopic dermatitis (AD), which are both common skin diseases. Unfortunately, as there is no cure, patients often experience a lifelong struggle with these conditions. The impact on patient's lives from both diseases has been well documented.

This review article begins with a discussion on the instruments used to measure health-related quality of life (HRQOL) and the comparison between chronic skin diseases and other medical illnesses. This is followed by a review of the psychological, social, and occupational impact of psoriasis and atopic dermatitis.

Evaluating the impact of skin disease on patients’ lives

  1. Top of page
  2. Abstract
  3. Introduction
  4. Evaluating the impact of skin disease on patients’ lives
  5. The impact of chronic skin diseases versus other chronic diseases
  6. Psychological impact
  7. Social impact
  8. Occupational impact
  9. Conclusion
  10. References

Information on HRQOL has many important functions such as improving physician–patient interactions, increasing pubic awareness, determining treatment value, and lobbying for more financial support from insurance companies, government bodies, etc. Therefore, evaluation methods are necessary to effectively assess patients’ HRQOL.

Interviews and discussion groups are straightforward methods to gain patient perspective on the impact of their disease(s). Such open forums are valuable for understanding what issues exist, but because the information is anecdotal, drawing general conclusions, tracking changes, or comparing different populations is difficult. Validated psychometric tools are used precisely for these purposes. HRQOL instruments can be physician- or patient-administered, and can target general or specific populations.

The SF-36 is an example of a quality of life instrument that is applicable to the general population. It assesses eight domains of health (physical functioning, role functioning related to physical status, bodily pain, general health, vitality, social functioning, role functioning related to emotional status, and mental health). The eight domains can be combined into two summary scores – the physical component summary (PCS) and the mental component summary (MCS) with lower scores indicating worse quality of life (5).

There are also dermatology-specific instruments; one of the most commonly used is the dermatology life quality index (DLQI) (6). The DLQI consists of 10 questions about symptoms and feelings, daily activities, leisure, work and school, personal relationships, and treatment. The scores range from 0, which is no impairment to quality of life, to 30, which is maximum impairment. Such dermatology-specific tools allow for close comparison between diseases. For example, the DLQI showed that psoriasis, eczema, and generalized pruritus have a greater impact on quality of life than acne, basal cell carcinoma, and viral warts (6).

The most narrowly applicable quality of life instruments are those that are disease specific, such as the psoriasis quality of life questionnaire – 12 (PQOL-12) (7), which was designed for use with psoriasis patients. These disease-specific instruments can be used with a more general health instrument like the SF-36 to give complementary information for a specific skin disease (8).

The impact of chronic skin diseases versus other chronic diseases

  1. Top of page
  2. Abstract
  3. Introduction
  4. Evaluating the impact of skin disease on patients’ lives
  5. The impact of chronic skin diseases versus other chronic diseases
  6. Psychological impact
  7. Social impact
  8. Occupational impact
  9. Conclusion
  10. References

Comparing chronic skin disease to other chronic diseases is important so that the public, physicians, patients, and policy makers understand the relative impact of skin disease. Although skin diseases such as psoriasis and eczema may not be as physically dangerous as chronic diseases like hypertension and diabetes, skin diseases affect quality of life just as much, if not more, than other diseases.

Psoriasis

A small study of 32 patients in 1990 suggested that patients with psoriasis have a level of disability similar to those with angina or hypertension (9). In a more recent study using the SF-36, psoriasis patients were comparable to patients with cancer, arthritis, hypertension, heart disease, and depression in terms of decreased physical and mental function (1). Only patients with congestive heart failure had a lower physical component score and only those with depression and chronic lung disease had a lower mental component score than those with psoriasis.

Atopic dermatitis

Similarly, a SF-36 study by Kiebert et al. showed that adult atopic dermatitis (AD) patients had significantly lower mental health component scores than patients with diabetes or hypertension (10). AD patients also have lower social functional scores than patients with hypertension. Another study evaluated the impact of skin disease in young patients (5–16 years old) using the children's life quality index (CLQI) (11), which is similar to the adult DLQI. From the parental perspective, the quality of life impairment in children with generalized AD was comparable to that in children with cystic fibrosis and renal disease. Only cerebral palsy scored worse than AD in terms of overall quality of life.

Psychological impact

  1. Top of page
  2. Abstract
  3. Introduction
  4. Evaluating the impact of skin disease on patients’ lives
  5. The impact of chronic skin diseases versus other chronic diseases
  6. Psychological impact
  7. Social impact
  8. Occupational impact
  9. Conclusion
  10. References

Although skin disease may be precipitated or exacerbated by psychologic stress, personality traits, and/or psychiatric morbidity, the impact of skin disease may also actually lead to secondary psychiatric disorder. The prevalence of psychiatric disorders, most commonly depression and anxiety, ranges from 25% to 43% among dermatologic patients (12–15). However, causal inferences cannot be drawn because these studies were cross-sectional.

There are significant consequences documented with regards to the association between chronic skin disease and psychiatric morbidity, including higher rates of suicidal ideation. Seven point two percent of severe psoriasis and 5.6% of acne patients reported suicidal ideation – higher rates than that reported in general medical patients (2.4–3.3%) (16). In a recent study involving 466 dermatologic inpatients and outpatients with a wide array of skin diseases, 8.6% reported suicidal ideation (17). Some of the factors associated with suicidal ideation included inpatient status, female sex, psychologic distress, and the presence of a depressive or anxiety disorder.

Psoriasis

The psychologic impact of psoriasis on patients’ lives has been well documented. Common sentiments among psoriasis patients include feeling self-conscious, helpless, embarrassed, angry, and frustrated (18). The diagnosis itself carries tremendous psychologic burden; approximately half of patients feel depressed and anxious about having the diagnosis (19). One study showed a 9.7% prevalence of death wish and a 5.5% prevalence of acute suicidal ideation in psoriasis patients (20). Although clinical improvement may decrease the frequency of psychiatric disturbance in psoriasis patients, many still suffer psychologically despite significant physical improvement (21). Therefore, it is important for dermatologists to monitor the psychologic status of their patients, regardless of the severity of their disease.

Atopic dermatitis

Although psoriasis patients often suffer from depression, patients with atopic dermatitis tend to experience increased anxiety, neuroticism, and hypochondriasis in addition to depression (22). Patients often experience anger and frustration with their disease (23). Although the exact relationship between psychologic morbidity and atopic dermatitis has yet been determined, patients clearly experience psychological distress related to their AD. Adults with AD have an increased incidence of psychiatric disorders (24). In patients with severe disease, the average Becks depression inventory (BDI) and the self-rated anxiety score (SAS) were both higher than in healthy controls (25).

Children also experience negative psychologic impact from AD. For example, a study by Absolon et al. showed that children with AD had twice the psychologic disturbance as age-matched controls (26). Another study of infants found that patients with eczema had significant excess of dependency/clinginess (50% vs. 10%), fearfulness (40% vs. 10%) and behavioral problems (50% vs. 12%) as compared to the control population (27).

Social impact

  1. Top of page
  2. Abstract
  3. Introduction
  4. Evaluating the impact of skin disease on patients’ lives
  5. The impact of chronic skin diseases versus other chronic diseases
  6. Psychological impact
  7. Social impact
  8. Occupational impact
  9. Conclusion
  10. References

Although many diseases affect people's social lives, skin disease can be particularly socially devastating. The visibility of dermatologic disease combined with its psychologic impact often leads to feelings of embarrassment, decreased confidence, rejection, and social withdrawal (28,29), Patients may also encounter misunderstanding or ignorance about their skin disease(s), such as public fear of contagion in noninfectious conditions like psoriasis.

Psoriasis

The social impact of psoriasis can be extensive and debilitating. Fortune et al. described that stress resulting from anticipating other people's reactions to their psoriasis was the best predictor of disability compared to any other medical or health status variable (30). Such a fear of stigma or rejection may have resulted from negative social experiences. For example, Ginsberg and Link reported that 19% of patients with moderate to severe psoriasis had experienced social rejection, such as being asked to leave the gym, pool, or hairdresser (29). As a result, patients tended to avoid social situations or public places where rejection might occur.

Interpersonal relationships are often affected as well. In a recent study, partners and family members of patients with psoriasis were interviewed on several aspects of their relationship (31). The study showed that family members and partners often had to spend extra time on housework, felt increased psychologic pressure, experienced disruptions to their social life as a result of embarrassment or time required to help care for the patient. Thirty-seven percent described deterioration in their relationship with the patient, whereas only 8% reported no effect at all.

Another issue between patients and their partners is sexual impairment. In a survey of 936 patients, 35.5% of patients reported sexual difficulties resulting from psoriasis (32). The study also showed that about one-third of patients with marked clinical improvement still presented with sexual problems at follow-up. Physicians should recognize that, for a particular individual, the severity of psoriasis does not necessarily reflect the impact on quality of life.

Atopic dermatitis

Because AD is more commonly found in children, the disease often affects the interaction between patients and their families. Children with AD are more likely to develop behavioral problems such as clinginess, dependency, and fearfulness as compared to children of the same age (27). Furthermore, children with AD have been noted to have a less secure attachment to their mothers (33). This has been theorized to be the result of the increased stress of having to care for children with AD. Mothers of AD children have characterized themselves as feeling more depressed, hopeless, and overprotective toward their infants as compared to control subjects (34). Howlett suggested that AD can affect the independence of children because overprotective parents may limit their social activities out of concern for their skin (35). As a result, children become overly dependent on their parents.

Young patients with AD may also experience real or perceived stigmatization from their peers. Lawson et al. reported that 60% of children were teased and bullied, and 34% experienced limitations in their recreational activities because of their skin (36). This may relate to why AD children tend to be introverted and have anger management problems (37). The social impairments found in AD children can also carry over in later years. Using the SF-36, Kiebert et al. found that patients over 16 years of age had significantly lower scores on social functioning than the general population.

Similar to psoriasis, atopic dermatitis in adults negatively affects interpersonal relationships. A recent study showed that 57.5% of AD patients reported decreased sexual desire and 36.5% of their spouses reported that the appearance of eczema had a negative impact on their sex life (38). In addition, approximately 15% of the couples had poor knowledge regarding the contagiousness of AD. Therefore, education is an important component of treatment even for adult patients and their families.

Occupational impact

  1. Top of page
  2. Abstract
  3. Introduction
  4. Evaluating the impact of skin disease on patients’ lives
  5. The impact of chronic skin diseases versus other chronic diseases
  6. Psychological impact
  7. Social impact
  8. Occupational impact
  9. Conclusion
  10. References

Given the psychological and social burden of chronic skin disease, it is not surprising that patients experience decreased work productivity. Patients with severe skin disease can become too physically disabled to work (absenteeism), or even if they are able to work, their productivity is often compromised (presenteeism). Absenteeism and presenteeism both contribute to the indirect cost and overall economic burden of skin disease. In 2004, the calculated indirect cost of 22 dermatologic conditions for the United States was $10.2 billion (39).

Psoriasis

Psoriasis has been shown to increase patient absenteeism and presenteeism. In a study of 369 patients with severe psoriasis, 59.3% had lost a mean of 26 days from work because of their disease (40). Of those who were not working, over 30% attributed their work status to their psoriasis. Another study showed that subjects missed an average of 6.6% of their working time in the past 4 weeks as a result of their psoriasis (41).

Studying and quantifying the occupational impact of diseases have become increasingly important in determining the overall cost of the disease. This is particularly relevant for psoriasis because of the recent introduction of the expensive biologic medications. Schmitt and Ford reported that the indirect costs of productivity loss exceeded the direct costs, therefore justifying the use of expensive medications (41). In addition, the heath-related work productivity loss was more strongly associated with quality of life (DLQI scores) than physical severity of disease. Therefore, if the goal is to minimize the economic burden of psoriasis, one should focus on subjective patient quality of life just as much as objective physical outcomes.

Atopic dermatitis

Atopic dermatitis also decreases work productivity, with increased number of sick days even in patients with mild to moderate AD (42). In 2002, the cost in treating in AD in the United States was estimated to be $609 per patient annually, taking into account direct and indirect costs (43). Because direct medical costs were found to be only 27% of the total, a significant underestimation occurs if only direct costs were used to estimate AD financial burden. Although there is limited data, one can hypothesize that even nonworking aged children with AD incur indirect costs; for example, parents may have to miss work to take their child to a dermatologist.

Conclusion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Evaluating the impact of skin disease on patients’ lives
  5. The impact of chronic skin diseases versus other chronic diseases
  6. Psychological impact
  7. Social impact
  8. Occupational impact
  9. Conclusion
  10. References

Although this article has divided the quality of life impact of chronic skin disease into psychological, social, and occupational domains, there is inevitably overlap between these categories. Physicians should recognize the negative effects of chronic skin disease because treating according to disease severity may not adequately address a patient's suffering. Increasing awareness of quality of life issues will help assure that chronic skin diseases are not under-appreciated, under-treated, and under-funded.

References

  1. Top of page
  2. Abstract
  3. Introduction
  4. Evaluating the impact of skin disease on patients’ lives
  5. The impact of chronic skin diseases versus other chronic diseases
  6. Psychological impact
  7. Social impact
  8. Occupational impact
  9. Conclusion
  10. References