The NEA research team has published its latest paper on the out-of-pocket (OOP) costs of atopic dermatitis (AD) in the U.S. — this time examining OOP costs among caregivers of children with AD compared to adults.
Published On: May 3, 2021
Last Updated On: Sep 28, 2022
People affected by eczema live with significant disease and quality of life burden – the physical and often visible burden from signs and symptoms of eczema, but also numerous unseen burdens related to emotional, social and psychological impacts of life with, or caring for, a chronic disease (Figure 1). During Mental Health Awareness Month, we take this important opportunity to share the current science underlying connections between mental health issues and atopic dermatitis (AD), advances in screening for and monitoring mental health symptoms in AD patients, therapeutic interventions and inroads for self-care.
Prevalence of Mental Health Disorders in AD
Research publications raising awareness of the connection between dermatological diseases such as AD and mental health issues are increasing in number, and the data provides sobering confirmation of the lived experience of many patients and caregivers with eczema.
The significance of these findings is further underscored by recent studies reporting AD is more strongly associated with depression and psychological distress than many chronic dermatologic and other diseases2, with the negative impact on mental health greater for patients with AD than that for patients with heart disease, diabetes and high blood pressure25.
Contributing Factors of Mental Health Issues in AD
AD can affect people’s entire lives, yet itching and sleep disturbance – which are frequently linked – are most often cited by patients and caregivers as the greatest causes of disease burden in AD regardless of disease severity21,26. The unpredictability of AD flares coupled with the limited ability of currently available treatments to effectively alleviate itch and afford long-term disease control, especially for individuals with moderate to severe AD, correlates with symptoms of anxiety and/or depression27,28. More frequent and severe sleep disturbance is also associated with increased itch, diminished health-related quality of life and increased anxiety/depression symptoms26. Katrina Abuabara, MD MSCE at University of California San Francisco said, “The lack of predictability and control in patients and caregivers’ lives has the capacity to create secondary stress in multiple life domains and requires high levels of vigilance. AD may also impact healthy coping mechanisms such as social and intimate relationships and/or leisure activities.”
The effects of AD on other life areas such as reduced social life and increased isolation are notable as well for their impact on emotional health. Patients with AD, especially affected children and teens, can face self-esteem concerns and mental health impacts due to the stigmatization (i.e., negative judgment, disapproval, lack of acceptance) of their disease by peers, disease-related lifestyle restrictions and in some cases the effects of bullying15,29-31. Parents and caregivers can also be affected by similar issues, and may experience feelings of guilt, blame, worry and frustration20,21,29. Christina Schut, a medical psychologist at the Justus-Liebig-University, Giessen, Germany said, “Parents often have to cope with suggestions from relatives and friends saying, ‘you should treat your child’s skin differently.’ This can put a lot of stress on the parents.”
There are also potential negative impacts of co-occurring mental health issues and AD on work absenteeism or productivity. A recent study analyzing data from the 2017 US National Health and Wellness Survey reported that adults with moderate-to-severe AD (N=1017) who experienced sleep difficulties (56.6%), depression (70.7%), and anxiety (60.9%) were more likely to have higher levels of work impairment32. Shawn Kwatra, MD, assistant professor at Johns Hopkins University, and author of the above study said, “As a person who suffers from eczema myself, I can attest to the fact that it is pretty hard to concentrate on your work when you can’t stop itching.”
Mental Health Struggles Can Worsen AD (and Vice Versa)
There is a sort of “chicken or egg” discussion ongoing about how AD can cause mental health issues, but also how mental health issues can increase symptoms of AD. Gil Yosipovitch, MD, a professor at the University of Miami and renowned researcher on itch said, “Stress and anxiety are major contributors to aggravation of itch. Itch causes patients to scratch which damages the skin barrier function, amplifying the suffering. Over 50% of AD patients reported that at least one stressful life event occurred in the month prior to an exacerbation of their disease. Flaring of the AD can then increase stress levels and exacerbate anxiety and depression.”
Dr. Yosipovitch’s work and other research studies confirm this brain-skin connection and have demonstrated key pathways involved in the stress-induced “itch-scratch cycle”33-36. A hormonal pathway, known as the hypothalamic-pituitary-adrenal axis, is disturbed in AD, which then effects nerves, the immune system and even keratinocytes (cells important for skin structure and barrier), leading to increased inflammation and decreased barrier function. Stress has even been shown to inhibit repair of the skin barrier function itself33. While short-term stressors can have these effects, even more of the body’s responses can go awry when the stress is more long-term, or chronic. Brain ‘circuitry’ that normally produces a negative-feedback process once the stressor has been removed, can become ‘turned down’ because of chronic stress – weakening a person’s ability to adapt. Stress and anxiety can also lead to the production of cytokines and histamines, involved in the body’s immune response, which also results in increased itch. While this interplay between mental health and AD can be complex, mental health outcomes related to anxiety and depression are now being included in several clinical trials for oral and injectable medications for AD – a key acknowledgement of the importance of this issue in the treatment of AD37.
Mental Health and the Care Conversation
With the connections between AD and mental health impacts gaining greater research attention, have the care conversations between patients and caregivers changed? Yes and no. While many healthcare providers recognize the need to assess and monitor mental health symptoms in their AD patients, Anna Fishbein, MD, of Northwestern University said, “It’s very frustrating when we see someone who is struggling and all of us as clinicians are trying to put this on our radar during our brief visits. Many clinicians are not finding it (mental health issues) because they are not asking about it.” Patients and caregivers may also have varying degrees of comfort discussing these issues with their healthcare providers.
To try to improve this situation, efforts are underway to develop and validate tools that would allow for quick assessment of mental health during an office visit and efficiently log the results into electronic medical records. Existing tools such as the Hospital Anxiety and Depression Scale (HADS) have been used in clinical trials and were recently evaluated for use in the office care setting38. The Patient-reported Outcome Measures Information System (PROMIS) is being investigated as a possible solution and includes over 300 measures of physical, mental and social health for use with the general population and with individuals living with chronic conditions. PROMIS was recently assessed for adaptation to dermatological care39, including AD. Overall, this recent study demonstrated that assessing pain interference, anxiety and depression using PROMIS provided insight into disease severity and treatment response in multiple skin conditions39. PROMIS endpoints for assessing sleep and itch have also been studied40-43. Sub-domains of other patient-reported quality of life tools, such as SkinDex, also have the potential can also provide an assessment of emotional impact of AD for adult patients44,45.
Assessing mental health in young children and in infants is more difficult. Laura Wakschlag, PhD, and her team at Northwestern University recently validated a parent survey tool called The Early Childhood Irritability-Related Impairment Interview (E-CRI) to assess the extent of irritable mood and tantrums in pre-school aged children (average age 4.82 years) and infants/toddlers (average age 14 months), allowing understanding of whether these factors were interfering with a young child’s developmental adaptation and social skills46. This might be predictive of future health and stability and may be used to assess the level of emotional discomfort caused by diseases of young childhood, including AD.
Short of using specific tools to document and track mental health symptoms, there is opportunity to start more simplistically. Dr. Schut said, “My advice would first be for the physician to listen and ask questions to get a better understanding of what is going on in the patient’s life. Was there anything important in the last couple of weeks – a stressful life event, stress at work, stress in the family? The physician can do active listening, recognizing the patient’s emotions and clarifying whether they are understood correctly by the doctor.” This opportunity to initiate this conversation extends to patients and caregivers as well – raising it as a key area in describing how life with their AD has been during an office (or telehealth) visit.
Looking to the future generation of healthcare providers, there is also opportunity to improve awareness of mental health issues and training to conduct mental health screening. A recent study found that 64% of the dermatology residents in the United States surveyed had not had education on depression screening as part of their medical training curriculum or clinical practice even though most residents said they thought depression screening was important to provide more whole-person care47. Dr. Kwatra said, “I am hopeful that patients and providers alike recognize the enormous toll of uncontrolled AD on all facets of patients’ lives so treatment can be initiated early and quality of life improved.”
Interventions to Improve Mental Health
There are medical as well as non-medical interventions that may improve mental health for AD patients and caregivers, starting first with the goal to gain better disease control. “There are several effective topical and systemic therapies for AD, with several additional agents in the pipeline. These agents can disrupt the itch-scratch cycle and lead to decreased systemic inflammation, improvement in mental health outcomes, and an overall greatly improved quality of life,” stated Dr. Kwatra. Dr. Yosipovitch agreed and honed in specifically on ways to alleviate the itch-scratch cycle. “I think we will need to use more holistic approaches to treat the complexities of chronic itch in AD similar to what has been done with chronic pain. No doubt that the new biologics help our patients significantly, but stress reduction and relaxation should be part of our treatment as well. Deep muscle relaxation, cognitive behavioral therapy and acupuncture can reduce nerve sensitization and itch. We sometimes give drugs such as mirtazapine (an anti-depressant) in low doses and gamma aminobutyric acid (GABA) drugs can reduce the nerve activity and the itch and eczema improves. Educating dermatologists on these approaches and recommending that patients work with psychologists would help.”
Psychological interventions and adjunctive therapies are also being explored to help with the itch/scratch cycle and associated mental distress48. Stress reduction techniques like habit reversal training (a combination of awareness training and practicing a competing response to control the habit) and cognitive behavioral therapy (a combination of habit reversal training, relaxation trainings and techniques aimed to restructure thoughts and the senses (i.e., identifying harmful thoughts and replacing them with positive ones)) are beginning to be studied in clinical trials49,50. Dr. Schut said, “Patients can react to their itch with catastrophizing thoughts such as, ‘My itch will never end’ or ‘I will bleed and look terrible.’ These thoughts can actually heighten the itch intensity, so replacing these with conscious positive thoughts and actions can actually ease the itch.”
In terms of alternative and self-care treatments, massage therapy can help reduce the sensation of itch. Acupuncture and acupressure can reduce histamine and allergy-induced itch. Mindfulness-based stress reduction, which is moment-to-moment awareness without judging emotions, thoughts or sensations, often accompanied by breathing techniques, can reduce stress not only in AD patients but also in their caregivers33,48,50. Finding support groups where patients and/or caregivers come together to increase knowledge and offer support can also be reassuring and reduce stress. Dr. Abuabara said specifically to caregivers, “Do not underestimate the importance of making time for yourself. Although it can be beyond challenging to find the time and resources to do so, imagine the announcement made before a plane takes off: ‘make sure your mask is secure before you help others’.”
Take Home Points:
Covid-19 and Effects on Mental Health in AD
Some evidence suggests that the Covid-19 pandemic worsened mental health symptoms of patients with allergic diseases, including AD51. Social isolation increased economic burden, and news overload during quarantine increased psychological stress including emotional exhaustion, irritability and anger, depression, panic, anxiety and post-traumatic stress disorder52,53. Similarly, during the early stages of the Covid-19 pandemic, caregivers fared worse that non-caregivers in terms of mental health and fatigue54. Physical exercise, support groups and stress-reduction techniques were recommended to counter these impacts53. Publications are beginning to emerge discussing the benefits of turning suffering into growth through positive reframing, maintaining hope and courage, appreciating life, engaging in meaningful activities and socializing even via virtual methods55. It has yet to be seen if some aspects of quarantine/virtual existence, including being more able to control our own schedules, reducing commuting time and better regulating our own eating and sleeping schedules, may exert benefits on mental health.
Co-authored by Wendy Smith Bogolka, MBS, National Eczema Association, USA, and Jodi L. Johnson, Ph.D., Departments of Dermatology and Pathology, Feinberg School of Medicine, Northwestern University, USA.
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