Surveys are a powerful form of research that collects information from a cross-section of people to understand trends and relationships over a whole population.
We design surveys to investigate various aspects of the eczema lived experience: health burdens, financial burdens, quality of life, care experiences, treatment needs and more. Data collected from our surveys combines your individual perspectives with thousands of others affected by eczema.
The result? Important and novel insights that advance research, support better eczema care and highlight the myriad of impacts eczema has on patients, caregivers and families.
Learn about our ongoing efforts and see what surveys are ready for your input.
Atopic dermatitis is the most common form of eczema, but it’s not the only one. We want to know about our community’s experiences with three other types of eczema: seborrheic dermatitis, dyshidrotic eczema and hand eczema.
The purpose of this survey is to capture the lived experience and patient landscape for adult and pediatric eczema patients with a diagnosis of seborrheic dermatitis, hand eczema and/or dyshidrotic eczema with the goal of helping NEA provide better resources and advocacy for the entire eczema community.
Eczema Action Plan Survey
Eczema can be complicated. Your or your child’s symptoms may change in severity or you may find that treatments that once worked no longer provide the same relief. An eczema action plan (EAP) is a personalized set of instructions that provides guidance on what actions to take when eczema symptoms change or worsen. EAPs are created by patients/caregivers, together with their healthcare provider, to help with self-management of eczema.
The purpose of this survey is to understand the landscape of action plans in atopic dermatitis among NEA’s community of patients, caregivers and providers.
Survey Status: Closed (Dec. 2022) – Analysis In Progress.
Mental Health Survey
We know that eczema affects more than just your skin, and many people may also experience the burden of mental health symptoms. The purpose of this survey is to understand the patient/caregiver experiences with, and expectations of, mental health care as it relates to eczema and determine the impact of mental health and access to mental health care on adult atopic dermatitis patients and caregivers in the United States.
Survey Status: Closed (Nov. 2022) – Analysis In Progress.
Atopic Dermatitis Care Experience Survey
A follow-up to the Atopic Dermatitis Prescription Treatments Survey, the purpose of this survey is to learn about how easy or difficult it is for patients/caregivers to navigate health insurance, build the right care team and get care.
Survey Status: Closed (Dec. 2021) – Analysis In Progress.
Atopic Dermatitis Prescription Treatments Survey
NEA is committed to understanding all aspects of the experience of living with eczema for affected individuals and their families. The purpose of this survey is to learn about patient/caregiver experiences obtaining prescription treatments for their/their child’s atopic dermatitis, and the impact of these experiences on their life. The information provided in this survey will help guide NEA’s advocacy program to establish and advance policy agendas that address patients’ unmet needs and improve patients’ ability to get quality care and treatment.
Survey Status: Closed (July 2021) – Analysis In Progress.
Shared Decision Making
The purpose of this survey is to understand how the eczema community engages in shared decision making with their doctor(s). Shared decision making is an approach used in a clinical setting to empower patients to make informed decisions alongside their doctor when faced with treatment and management options. Engaging in shared decision making may improve clinical experience and health outcomes.
Survey Status: Closed (March 2021) — Analysis in Progress
Eczema Community Perception of Clinical Trials
The unmet need for effective eczema treatments is leading to an increase in eczema clinical trials, yet we learned from the 2019 Patient Focused Drug Development Meeting that only 8% reported participating to date.
The purpose of this survey was to learn about the eczema patient and caregiver community’s awareness of, experience with and motivations/barriers to participating in eczema clinical trials. A fuller understanding of eczema clinical trials awareness, attitudes and participation factors could be used to inform eczema clinical trials design, education and recruitment — ultimately changing patients’ future experiences in eczema clinical trials.
Survey Status: Closed (June 2020) – Analysis In Progress.
Out-of-Pocket Expenses for Eczema
The purpose of this survey was to learn more about the nature, level and impact/burden of out-of-pocket healthcare and related financial costs for the evaluation, care and treatment of eczema in the U.S. Insights from this survey will support awareness of the broader financial impact from eczema management.
Findings have been published in Dermatitis. Read the paper HERE.
Highlights from this paper include:
- Documenting for the first time from the U.S. patient/caregiver perspective, the diverse categories of healthcare and related OOP expenses related to eczema care, including newly reported categories of non-prescription products, complementary and supportive care approaches — and the average $ spent in each category.
- Nearly 60% of patients reported using 3 or more prescription therapies, especially for individuals with moderate/severe disease or poor disease control.
- Of note, OOP expenses for mental health services were reported by less than 15% of individuals.
- The median annual OOP expense for AD was $600, however 42% of individuals spend greater than $1,000/yr, and 8.5% report out of pocket expenses greater than $5,000/yr.
- This average amount is higher than previously reported estimates and likely more accurate due to its inclusion of expenses not typically covered by health insurance.
- The highest reported OOP expense reported in the survey was $200,000/yr.
- Collectively, these results highlight the need for treatment plans that are sensitive to the broad array of OOP expenses incurred by patients and caregivers to maximize outcomes while minimizing financial burden.
Additional findings on the impact and associations of AD and OOP healthcare expenses have been published in Dermatitis: an overview of those findings is available here.
Additional findings on the financial impact of AD on Black Americans have been published in the Archives of Dermatological Research: an overview of those findings is available here.
Survey Status: Closed (December 2019) – Results published HERE