In Your Words
The In Your Words survey series is designed to help us learn more about the challenges people living with eczema face every day. Survey responses shape a deeper understanding about the impact eczema has on people with eczema and their families, define our national policy priorities, and allow NEA to develop meaningful actions. Together we can effectively advocate for better eczema care.
Patient satisfaction survey: Evaluated patient satisfaction and the role of doctors in the treatment of a chronic and serious form of eczema, atopic dermatitis (AD)
Caregiver survey: Examined how eczema impacts school-age children with eczema and their families
Adults with atopic dermatitis survey: Asked adults with atopic dermatitis to share how AD impacts their day-to-day lives
Overall, patients are dissatisfied with the treatment they receive for AD, see multiple doctors seeking treatment, and want more information and more options.
Overall, are you satisfied with the treatments of atopic dermatitis? 86% reported they were NOT
Overall, do you think doctors know how to treat atopic dermatitis? 91% reported NO
How many doctors have you seen for this problem? More than 56% have seen up to 5 doctors for their child’s AD
Participant comments included:
- Lack of attention to the mental health impact of AD/eczema
- Disease is “psychologically disabling”
- Desire for more integrative care –someone who directs to correct dr/fields AD/eczema
- Wish to treat root cause, not just symptoms
- Sense that doctor doesn’t care about me
- Request referral to specialist or someone who could test for other things: allergies, food sensitivities, infection/bacteria,
- Frustrated with doctor’s heavy reliance on steroids (topical and injections)
- Frustration that doctors need to understand it’s more than just a skin condition
- Comment that “most doctors aren’t able to treat difficult cases and don’t move beyond most basic treatments –need to provide more education about managing eczema beyond ointments –should refer severe to doctors who specialize in advanced therapies
Caregivers answered questions about how eczema impacts school-age children who have eczema and their families.
Caregivers overall reported that eczema and atopic dermatitis have both negative physical and psycho-social impact on their children including lowered self-esteem, problems in school, and interrupted sleep. Their child’s eczema also negatively impacts their overall family quality of life including their relationships and family budget.
The impacts of bullying noted by caregivers included:
- Two-thirds had lowered self-esteem
- A lack of interest in managing their condition
- Negatively effect on their outside interests and sports
Top issues outside of bullying included problems taking care of their eczema at school, exposure to triggers, and problems concentrating in class.
Nearly 50% of children with eczema miss at least one day of the school year because of their eczema; 17% miss five or more days of school due to their eczema.
Eczema impacts families, too. Nearly 60% of caregivers reported that they feel guilty that their child has eczema; and more than half reported that their entire family’s sleep is affected when their child’s sleep is interrupted by their eczema.
Sleep is essential for good health and for childhood development. But children with eczema have difficulty sleeping due to the itch associated with eczema.
Close to 50% of caregivers reported that their child’s sleep is interrupted 3 or more days a week due to eczema.
Nearly 40% of caregivers reported interrupted sleep at 3 or more days a week due to their child’s eczema.