Psychosocial impact of atopic dermatitis in skin of color

INTRODUCTION

Atopic dermatitis (AD) is a complex chronic relapsing inflammatory skin disease associated with intense pruritus, xerosis, recurrent eczema, and sleep disturbances. It affects both pediatric and adult populations worldwide, with prevalence varying across different racial and ethnic groups.^[1,2] Chronic stress, anxiety, depression, economic burden due to treatment costs, burden on family, and social stigma associated with the disease can lead to a significant psychosocial impact on them.^[3,4] In patients with skin of color (SOC), including, but not restricted to Africans, African Americans, Hispanics, Latinos, South Asians, Middle Easterners, and Indigenous Oceanic backgrounds, the psychosocial burden may be compounded by cultural, diagnostic, and healthcare access disparities. AD in SOC populations differs from those with white skin in clinical presentation and treatment considerations.^[2,5] Pigmentary sequelae and severe clinical presentations significantly impact the cosmetic appearance and potentially the psychosocial well-being of the SOC population suffering from AD.^[5-8] In addition, while the effects of AD on psychological well-being have been studied in global literature, there remains a paucity of similar data in the Indian population.^[9] Hence, this article aims to provide a comprehensive overview of the psychosocial impact on individuals with AD SOC, exploring the unique challenges relevant to this population.

PSYCHOSOCIAL BURDEN OF AD IN SOC

AD impacts multiple psychosocial dimensions of affected SOC patients. This condition compromises quality of life (QoL) due to itching, disrupted sleep, and noticeable skin changes, leading to mental health issues such as anxiety, depression, and reduced self-esteem. Social functioning is affected, with patients avoiding social interactions due to embarrassment. The burden extends to families, who may experience stress and disrupted routines, especially when caring for children with severe disease. Financial strain from ongoing treatments and lost workdays adds to the distress. Moreover, healthcare disparities, including limited access to dermatologic care and cultural barriers, further exacerbate the psychosocial burden in the SOC populations.^[9-11]

IMPACT ON THE QOL

QoL, a measure of physical, mental, and social well-being, is a key outcome in AD trials. In the SOC population, emotional distress, anxiety, and sleep disturbances are significant QoL impacts caused by AD.^[12] The greater disease severity is directly correlated with poorer QoL in both adults and children with AD.^[13,14]

CAREGIVER BURDEN AND FAMILY IMPACT

AD affects not only patients but also their caregivers across the lifespan.^[13,21] Regularly applying topical creams can be hard and stressful for kids and their parents.^[22] When children wake up at night, it also disrupts the sleep of parents as they have to get up to care for them.^[23] This leads to parents’ sleep being reduced, which in turn negatively affects the family’s QoL.^[13] As children’s HRQoL worsens, caregivers’ health tends to decline, both mentally and physically, according to a Singaporean study.^[22]

In Ailawadi et al.^[9] study, family members experienced substantial disruption, particularly those of younger children. The DFI scores were higher in families of infants (mean 11.7) compared to those of older children (mean 8.9). Expenditure on treatment, emotional distress, and physical exhaustion of the primary caregiver were the most burdensome factors. The DFI scores strongly correlated with children’s QoL scores and disease severity, underscoring the interdependent burden borne by families caring for children with AD.

SOCIAL IMPACT AND STIGMA IN SOC POPULATIONS

AD-associated pruritus can cause scarring or pigmentation, which increases the psychological burden.^[25] Scaling, dryness, and lichenification in SOC patients will appear very prominent in visible areas due to the contrast against melanin-rich skin and contribute to potential stigma in this population.^[3,26-28] Hence, skin lesions can lead to embarrassment, low self-esteem, impacting interpersonal relationships and playtime, complicating the societal biases already experienced by this racial population.^[3,13,22] Adolescents may face bullying and teasing from peers if their skin lesions are not well controlled. This can result in feeling isolated from others. These negative experiences during adolescence can potentially impact their social and emotional well-being even as they grow into adulthood.^[29,30] In a study conducted by Chamlin et al.^[31] involving predominantly Asians, over half of the parents interviewed stated that both the adults and other children avoided interacting with their children with AD. They also stated that they themselves have limited their children’s social interactions to avoid discussions about their skin condition.

CULTURAL AND ETHNIC INFLUENCES ON DISEASE PERCEPTION

Cultural background can influence how individuals perceive their illness.^[13] Homogeneous skin color is often perceived as healthy and appealing across various cultures, making it essential to evaluate the psychosocial impact.^[3] In a study done among the African American pediatric population, structural racism plays a significant part in the severity of AD.^[34]

Differences in sociocultural factors and questionnaire interpretation may explain QoL score variations among various ethnicities. Understanding patients’ and parents’ beliefs about the impact of AD is essential for effectively supporting and managing a culturally diverse population.^[3] Adherence to prescribed treatments and the overall coping strategies could be influenced by these cultural beliefs. Healthcare providers need to be sensitive to these cultural nuances and integrate culturally appropriate education and support into their management plans. Misinformation on social media should be addressed, and when sharing scientific information, it should be done using culturally sensitive language.^[26]

FINANCIAL IMPACT

The financial burden of AD, including medication costs and repeated hospital visits, will substantially affect the marginalized communities.^[8,25] Financial burden is notable, particularly among middle- and lower-income families, where treatment costs could consume a significant portion of household earnings.^[9] A 6-month follow-up study done in India assessed the economic burden of AD in 40 Indian children in a public tertiary care hospital. Drug costs constituted over 70% of caregiver expenses, while travel and consultation charges were also substantial. The cost increased with disease severity. The financial burden was comparable to that of chronic illnesses such as diabetes and schizophrenia, and consumed up to 25% of a family’s earnings.^[11]

In the SOC population, where most patients lack insurance coverage, treatment costs of AD are usually borne by patients themselves. Adding to the woes, AD can impact occupation, especially in patients with hand and foot eczema. These can lead to inconsistent treatment, disease flares, and increased psychosocial distress.^[8,25] Thus, dermatologists should highlight the need for policies addressing financial barriers, particularly in low-resource settings.^[35]

IMPACT DUE TO HEALTHCARE DISPARITIES

The healthcare disparities encountered by the SOC individuals with AD include delayed diagnosis due to a lack of knowledge about the presentation of AD in SOC, underrepresentation in clinical trials, and limited standard care and healthcare access. Underestimation of disease severity can lead to the prescription of inappropriate treatment or a delay in treatment and delayed referral to a dermatologist.^[1,36-38] Underrepresentation of racial groups and lack of subset analysis by race in clinical trials for AD is a significant issue because this leads to limited evidence on the treatment options in ethnically diverse populations. Only 59.5% of clinical trials conducted between 2000 and 2009 reported ethnicity in their results. The safety and efficacy data on targeted therapy in AD cannot be fully generalized to SOC individuals. The evidence-based guidelines for AD management usually do not account for differences in skin type.^[37] As a result of the above multiple factors, SOC patients experience poorer outcomes and higher healthcare costs, which can prolong their sufferings, leading to increased psychological stress.^[25] The summary of psychosocial impact is given in Figure 1.

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Figure 1:

Summary of psychosocial impact of atopic dermatitis in skin of color (SOC).

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ADDRESSING THE PSYCHOSOCIAL BURDEN IN SOC

Effective management of AD in SOC requires addressing not only the physical symptoms, but also various psychosocial domains such as QoL, stigma, diagnostic challenges, healthcare disparities, and cultural perceptions.

CONCLUSION

Numerous studies have shown that AD can decrease QoL in patients as well as their caregivers. It can cause social withdrawal, decreased work productivity, and financial burden. A comprehensive approach, including increased SOC representation in clinical trials, addressing stigma through education, and integrating culturally sensitive management strategies, would holistically improve the QoL of affected individuals and their families. By acknowledging the specific concerns of individuals with SOC, we can work towards improving their QoL and overall well-being.