Atopic Dermatitis and the Burden of Disease

Understanding AD’s impact to improve your quality of life

People living with atopic dermatitis (AD), the most common and chronic form of eczema, know first-hand the burden atopic dermatitis has on both individuals and families. The impacts reach far beyond the serious effects of the disease symptoms such as itch, pain, and inflammation –they also include quality of life issues such as sleep disturbance, economic burden, social and psychological issues, and decreased productivity at work or school. In order to effectively relay the impact AD has on you and your family to providers, insurers and others, we need to know what research has already documented, and where more information is needed to fill in the research gaps.

In 2015, NEA awarded Dr. Aaron Drucker, Assistant Professor, Department of Dermatology at Brown University, a NEA Burden of Atopic Dermatitis grant to do just that.

“People with eczema and atopic dermatitis deserve care that will empower them to better manage their condition to improve their quality of life,” said Dr. Drucker. “Not only is this comprehensive audit important to help more people understand what we do know, but also because it will highlight research we need to do that will have a direct impact on patient care. I have great hope that as atopic dermatitis gets more attention, there will be more therapies than ever before that will be safe and effective.”

In 2016, the first article based on the NEA Burden of Atopic Dermatitis was published in JAMA Dermatology, “Research Gaps in Quality of Life and Economic Burden of Atopic Dermatitis.” Key research gaps identified include:

Aaron M Drucker, M.D.

• Sleep: Sleep disruption is well documented in patients and families dealing with atopic dermatitis. Loss of sleep can adversely affect quality of life and be associated with other conditions ranging from ADHD to fracture risk. Gaps in knowledge include how sleep patterns in individually affected patients vary with disease flares; how chronic sleep loss affects patients over time; and how sleep quality rather than quantity is affected by atopic dermatitis and its treatment.
• Quality of Life: The audit confirmed that atopic dermatitis has a detrimental impact on the quality of life of patients and families that is comparable to other chronic diseases including cystic fibrosis, renal disease, diabetes, and asthma. Gaps in knowledge include: the demographic of those affected; how this effect manifests across the atopic dermatitis spectrum, and how treatment can mitigate quality of life impact.  How does atopic dermatitis affect social interactions, intimacy, and self-esteem?
• Pain: Several small studies and a recent large global survey of patients with AD reveal that pain is a common symptom experienced by patients. But there are no population-based studies defining the prevalence of pain in patients with atopic dermatitis.  There are also no in-depth studies of pain severity or studies exploring the cause of pain in patients with atopic dermatitis.  The impact of pain on the quality of life in patients with AD is also unknown.

These findings are being put into action:

This year, NEA’s Scientific Advisory Committee and Board of Directors prioritized funding the three key research gaps listed above through our Research Grant Program. A request for proposals has been released, and we expect reports detailing atopic dermatitis impact findings will be released in 2018.

We’ll also be sharing more news about the 2015 Burden of Atopic Dermatitis audit as additional articles based on Dr. Drucker’s research are published. This new information, alongside member surveys asking you to share how atopic dermatitis directly impacts your life, will greatly increase our shared understanding about the burden of eczema and AD.

Together, research about atopic dermatitis and exactly how it affects you in your day to day life will allow NEA to drive increased funding for research, new treatments, and a wide array of initiatives to improve you and your family’s health and quality of life.