Patient and Caregiver Perspectives on the Relationship between Atopic Dermatitis Symptoms and Mental Health

Abstract

Abstract: Background: Atopic Dermatitis (AD) patients have increased likelihood of developing depression and anxiety. The patient and caregiver's perceptions of the correlation of mental health (MH) and AD symptoms are not well understood.

Objective: To evaluate patient-reported MH symptoms and their correlation with AD disease severity and understand patient-perceived associations of AD with impacts to their MH.

Methods: Adult AD patients (18+ years) or caregivers of AD patients (8–17 years) were recruited to complete a survey about MH and their perception of its relationship with AD.

Results: Of 1496 respondents, 954 met inclusion criteria and completed the survey. Respondents were primarily adults (83.3%) with moderate AD (31.4%). In total, 26.0% reported MH symptoms >10 days per month, and most adults (65.5%) scored in the borderline/abnormal range on the Hospital Anxiety and Depression Scale. Most (70.6%) respondents perceived their MH was negatively affected by AD in the past 12 months. AD severity impacted the perception of the relationship between AD and MH; respondents were more likely to believe MH was impacted by AD when they/their child had severe AD.

Conclusion: Our study highlights patient and caregiver awareness of the detrimental impact of AD on MH. Addressing MH in AD care settings early in the disease journey may be beneficial.

Capsule Summary

Atopic Dermatitis (AD) has a negative impact on the mental health (MH) of patients that is exacerbated with increased disease severity.

Frequency and timing of MH symptoms were correlated with patient-assessed AD severity with severe AD driving higher reports of MH impact, and worsening MH symptoms were associated with the timing of a flare.

Patients and caregivers were aware of the connection between their/their child's AD symptoms and MH, suggesting the need for ongoing MH support and routine re-evaluation over the course of the disease.

INTRODUCTION

Atopic Dermatitis (AD) is the most common form of eczema, affecting 13% of children and 7% of adults in the United States.^1–3 It has a significant multidimensional burden of disease that negatively affects quality of life. Although itch has been characterized as the most troublesome symptom of AD,^4,5 studies have shown that AD is also strongly associated with symptoms of psychological distress, including anxiety and depression, which significantly contribute to overall patient disease burden.^4,6–8

Adult AD patients have a significantly higher likelihood of receiving a positive depression score than patients with other chronic diseases,⁴ and children and adolescents with AD are 2 to 6 times more likely to have depression, anxiety, and attention-deficit/hyperactivity disorder than children without AD.^9–11 The risk of a depression diagnosis is higher in individuals who have increased AD severity,¹² and various clinical trials suggest that resolution of mental health (MH) symptoms can occur with improvement in skin-related symptoms.^5,13,14

Although many large scale epidemiological and registry-based studies have demonstrated objective associations between AD and psychological concerns such as anxiety and depression, AD patients' subjective experience with, or perception of, that association has not been investigated. Moreover, there is limited information related to MH evaluation or diagnosis of MH conditions in the context of, or as a result of, AD care,¹⁵ although a previous study by the National Eczema Association (NEA) indicated that <15% of AD patients reported out-of-pocket expenses related to MH services.¹⁶

Awareness of the potential impact of AD symptoms on MH is important, as patients and caregivers who are aware of this interconnection may be more likely to seek help from their eczema health care provider. Furthermore, the subsequent recommended MH care might be more tailored to someone experiencing a chronic disease. In this study, we aimed to quantify the frequency and timing of symptoms of poor MH and their correlation with AD severity, as well as highlight the patient and caregiver perception of the relationship between their MH and their AD symptoms.

MATERIALS AND METHODS

A survey was administered from October 11 to November 22, 2022, to adults (≥18 years) with a self-reported diagnosis of AD or primary caregivers for pediatric and adolescent AD patients (8–17 years). Survey respondents were required to be US residents (including US territories). Survey availability was communicated to all NEA members through the NEA website, e-mail, social media, and the NEA EczemaWise app. Patient volunteers supported the initial conception of the survey, and pilot tested the instrument to provide feedback on content and literacy level.

Before completing the online survey, respondents provided electronic informed consent. This study was identified as exempt by the Western Institutional Review Board Copernicus Group. All data were anonymized for analysis and treated confidentially.

Survey topics included sociodemographic factors, symptoms of AD and MH, patient perception of the connection between AD and MH, and experience with referral and access to MH services. AD severity was self-assessed using the question: “Over the last month, how would you rate your/your child's eczema-related symptoms (for example, itching, dry skin, skin rash)? (options: clear, almost clear, mild, moderate, or severe.”

Respondents were shown the following definition for MH symptoms: “Mental health symptoms can be, but are not limited to, trouble sleeping, difficulty concentrating, poor appetite, feeling tired, little interest or pleasure in activities, and feeling hopeless.” The Hospital Anxiety and Depression Scale (HADS) was used to measure anxiety and depression for adult AD patients.¹⁷ The HADS consists of two 7-item subscales: HADS-anxiety (HADS-A) and HADS-depression (HADS-D). Each item is measured by symptom frequency ranging from 0 (no symptoms) to 3 (always symptoms).

The subscales have total scores ranging from 0 to 21 with higher scores signifying more severe psychological disease.¹⁸ Chi-square tests were used for comparisons of proportions. A one-way analysis of variance (ANOVA) and post hoc Tukey test were completed to compare differences in mean HADS scores by AD severity. Analysis was performed using R: A language and environment for statistical computing (version 4.1.0).¹⁹ Descriptive and inferential statistics were also used to analyze the data.

RESULTS

In total, 1496 people took the survey, 991 of whom met inclusion criteria. An additional 37 responses were removed for those who finished <50% of the survey questions. Therefore, analysis was conducted on 954 respondents (954/991; completion rate 96.3%). Table 1 gives the characteristics of the study population. The majority of respondents were adult patients (83.3%), and pediatric/adolescent patients were more likely to be male (P < 0.001), Black (P = 0.019), and Hispanic (P < 0.001) than adult patients.

Table 1.

Characteristics of the Study Population

	Adult Patients (n = 795)	Pediatric and Adolescent Patients (Caregiver Proxy Report) (n = 159)	P
Patient age (years, mean ± SD)	38.0 ± 16.9	11.4 ± 2.8	NA
Patient gender, % (n)			<0.001
Female	68.2% (542)	42.1% (67)
Male	29.5% (235)	57.2% (91)
Other/prefer not to answer	2.3% (18)	0.6% (1)
Patient race, % (n)			0.019
White	67.3% (535)	65.4% (104)
Black or African American	8.7% (69)	14.5% (23)
Asian or Asian American	10.2% (81)	4.4% (7)
Multiracial	4.6% (37)	3.1% (5)
Other (Native American or Alaskan Native, Native Hawaiian or Pacific Islander, some other race or ethnicity, I don't know/prefer not to answer)	9.2% (73)	12.6% (20)
Patient ethnicity, % (n)			<0.001
Hispanic	22.6% (180)	37.1% (59)
AD severity over past month, % (n)			0.016
Clear	3.6% (29)	8.8% (14)
Almost clear	17.7% (141)	18.2% (29)
Mild	27.8% (221)	32.1% (51)
Moderate	32.1% (255)	28.3% (45)
Severe	18.7% (149)	12.6% (20)
Age AD diagnosis, % (n)			NA
Under 2 years of age	24.1% (192)	26.4% (42)
2–5 years	16.2% (129)	25.8% (41)
6–9 years	8.4% (67)	28.9% (46)
10–17 years	17.6% (140)	18.2% (29)
18 years or older	30.4% (242)	NA
Not sure	3.1% (25)	0.6% (1)
Days of symptoms of poor MH in the past month, % (n)			0.125
0–5	48.8% (388)	50.9% (81)
6–10	23.8% (189)	29.5% (47)
11–15	11.8% (94)	10.1% (16)
15 or more	15.6% (124)	9.4% (15)

MH Symptoms in Patients with AD

Around one-fourth of respondents reported they or their child had symptoms of poor MH for >10 days in the past month. Those with severe AD were more likely to have >10 days of poor MH per month than respondents who reported any other AD severity (all P-values <0.001, Fig. 1). Adult patients had a mean HADS-A score of 9.3 (±4.4), which fell in the borderline abnormal category (8–10), and a mean depression score of 7.0 (±3.9), which fell in the normal category (0–7). In total, 65.5% of adults had scores in the borderline or abnormal range for the anxiety subscale, 46.4% for the depression subscale.

Figure 1.

Proportion of adult or pediatric/adolescent AD patients with >10 days of MH symptoms in the past month. Results are presented by self or proxy-reported clear (n = 43), almost clear (n = 170), mild (n = 272), moderate (n = 300), or severe (n = 169) AD in the past month.

Figure 2 shows the HADS-A (Fig. 2A) and HADS-D (Fig. 2B) scores for adult patients by current AD severity. There was a significant difference between the groups for both the anxiety and depression subscales (ANOVA, P < 0.001 and P < 0.001, respectively). Post hoc testing revealed that adults with severe AD had a significantly higher mean anxiety subscale score (10.8 ± 4.7) than those with clear/almost clear (8.6 ± 4.2, P < 0.001), mild (8.6 ± 3.9, P < 0.001), and moderate AD (9.6 ± 4.4, p = 0.044).

Figure 2.

HADS-anxiety and HADS-depression subscale scores for adult patients by eczema severity.

Adults with severe AD also had a significantly higher mean depression subscale score (8.3 ± 4.4) than those with clear/almost clear (6.4 ± 3.8, P < 0.001), mild (6.9 ± 3.6, P = 0.005), and moderate AD (6.9 ± 4.0, P = 0.004). In total, 75.8% (n = 113) of adults with severe AD were in the borderline abnormal/abnormal range for the anxiety subscale, and 57.0% (n = 85) for the depression subscale.

Respondent Perception of the Association Between AD and MH

Over 70% (70.6%; n = 674) of adults and caregivers reported that their/their child's MH was affected by their AD in the past 12 months. For those who indicated AD had not affected their or their child's MH in the past 12 months, 36.7% (103/280) said MH was affected by AD before that time period. AD severity impacted the perception of this relationship, as respondents were more likely to believe their or their child's MH was impacted by their AD when they had severe AD compared with any other severity (all P-values <0.01) (Fig. 3A).

Figure 3.

Proportion of patients and caregivers who felt their/their child's MH was impacted by AD in the past year (A) and that their or their child's mood or emotions were affected a lot/extremely by AD over the past month (B). Results are presented by clear (n = 43), almost clear (n = 170), mild (n = 272), moderate (n = 300), or severe (n = 169) AD in the past month.

Over one-third (37.1%) of respondents said their/their child's mood and emotions were affected by their AD a lot/extremely in the past month. This impact was also greater for those with severe AD (84.0% reporting mood or emotions as a lot/extremely affected) compared with all other severities (all P-values <0.001) (Fig. 3B).

Figure 4 shows the responses of adults and caregivers regarding the timing of symptoms of poor MH in relation to AD flares. Answers for “always” and “never” having poor MH symptoms, as well as “I have never thought about it” and “Don't notice poor MH related to flares,” were exclusive. Caregivers were more likely to report that their child “always” had MH symptoms than adult patients (23.9% vs 11.3%, P < 0.001). Respondents who chose >1 answer were asked to rank the extent to which timing impacts MH symptoms on a scale from 1 to 5, with 1 being “A little” to 5 being “Extremely.” MH symptoms were most impacted during a flare (mean rating: 4.4/5), followed by when patients were about to flare (3.6/5), and then between flares (3.2/5).

Figure 4.

Respondent perception of when they or their child experiences MH symptoms in relation to their eczema. “Never experience poor MH symptoms,” “Never thought about it,” “Don't notice poor MH related to flares,” and “Always have MH symptoms” (left) were exclusive answer options. For all other answers (right), respondents could select all that applied.

DISCUSSION

Through this study, we illustrate that adult and pediatric patients with AD experience a significant MH burden that increases with AD severity. One-fourth of respondents reported they or their child had symptoms of poor MH >10 days in the past month, and two-thirds of HADS-A scores for adults fell in the borderline/abnormal range. Although patients of all severities had associated MH concerns, those with severe AD were more likely to report more days per month of symptoms of poor MH and have higher HADS-A and HADS-D scores than those who were clear/almost clear.

The majority of adults and caregivers also perceived that their/their child's MH symptoms, mood, or emotions were affected by AD, with higher reports of MH impact for more severe AD. Both adult AD patients and caregivers of pediatric AD patients reported worsening MH symptoms right before flares and during flares, further supporting the association between MH and increases in AD signs and symptoms. These findings indicate that patients may need additional or supplemental MH support at different points of their disease. As a result, providers should consider routinely evaluating the MH needs of their patients, particularly those presenting in a flared state.

The HADS, a MH scale that has specifically been validated in adults with AD,¹⁷ was used in this study to measure anxiety and depression for adult AD patients. The mean HADS-A score for adult patients fell into the borderline abnormal range (9.3) and the mean HADS-D score fell at the top of the normal range (7.0), which were slightly higher than previous cross-sectional studies (HADS-A, 7.7; HADS-D, 6.0),⁸ (HADS-A, 7.2; HADS-D, 5.0),²⁰ and (HADS-A, 9.1).²¹ Over two-thirds of adult AD patients had anxiety scores in the borderline or abnormal range (65.5%) and nearly half of adults presented with depression scores in the borderline or abnormal range (46.4%).

Similar to this study, the studies conducted by Hsu et al. and Silverberg et al. found that HADS scores were increased in those patients who reported having moderate-to-severe eczema. Although the HADS is not validated for proxy report, the relationship between AD symptoms and MH applied to pediatric patients as well, as caregivers of children with severe AD were more likely to report their child having 10 or more days of poor MH in the past month than caregivers of children with clear skin.

Many (70.6%) patients and caregivers in this study reported that their or their child's MH was related to AD in the past year. AD can also affect a patient's mood and emotions.²² Respondents reported impacts of AD on mood and emotions in the past month (37.1% a lot/extremely affected by AD). In both cases, this relationship was increased as AD severity worsened (Fig. 3). Furthermore, our results suggest that although many patients experience poor MH during a flare or when symptoms are at their worst, many might also be apprehensive about future flares, which may result in unresolved anxiety even when skin is clearer.

These results support findings from a study conducted by Zuberbier et al., as they found on average, 55% of patients and 62% of caregivers are either always or sometimes worried about when they/their child are going to flare and 43% of patients are concerned about being seen by others in a public setting while they are experiencing a flare.²² This study highlights the emotional effect AD can have on patients despite the ever-growing pipeline of treatments and patient resources.

AD patients and their health care providers have the opportunity to acknowledge and raise MH considerations, regardless of AD clinical severity, to achieve a more holistic and integrative approach to AD treatment and care and address the vast domain of comorbidities.⁵ Establishing collaborations between MH professionals and providers who treat AD may also enhance accessibility and enable a pathway for practical support for patients who may not have otherwise been seen within the MH system.²³

A strength of this study is that it was patient centered, involving patients and caregivers as partners in the conception and design of the study. Using a patient-engaged approach to study design is a valuable strategy for exploring sensitive topics such as MH. Although previous research has illustrated an association between MH symptoms and AD, there is a paucity of research on the patient perspectives of that burden. Our study adds to limited literature on both the self-reported and clinical outcomes of the association between eczema and MH. Limitations of this study should also be addressed.

The HADS tool is not validated for proxy report, therefore, HADS was only administered to adult patients. Furthermore, the study relied on caregiver reporting of their child's MH and eczema severity for both exposures and outcomes. Patients and caregivers were not asked to disclose whether or not they were currently taking any psychiatric medications that would potentially affect how many days they presented with symptoms of poor MH.

Lastly, respondent demographics indicated a diversity of individuals related to AD severity, race, and ethnicity. However, survey recruitment methods and response bias may have yielded patients and caregivers who are not fully reflective of the affected AD population. Further survey respondents may be more engaged in their health care and, therefore, have increased awareness of the relationship between AD and MH. This points to an even greater unmet need for the broader AD community to understand the impact of AD on MH than the current study suggests.

CONCLUSIONS

This study confirms that many patients and caregivers are aware of the impact their AD has on their MH, and may need or desire additional support. Despite the known association between MH symptoms and AD, there remains opportunities to improve the standard of care for diagnosis and discussion around MH and AD. Future research may look at barriers to accessing MH services among the AD population and the extent to which providers who treat AD monitor and follow-up with their patients' MH.

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