The Rapid Eczema Trials programme is founded on the principle of listening to the experiences of people who have lived with eczema. Over the past few weeks, we’ve been developing a new research question focussing on a group whose voices are often missed from research – neurodivergent people with eczema.
‘Neurodivergent’ is a term used to describe people whose brains process, learn, or experience the world differently. It includes people with autism, ADHD, dyslexia, and Tourette’s. There is growing evidence that eczema is more common in patients who are neurodivergent. But the research only shows a statistical link. There is not enough information which tells us what everyday life actually feels like because these are experiences that numbers alone do not capture.
What do we know so far?
There are already surveys that measure eczema symptom severity and quality of life:
The POEM (Patient Oriented Eczema Measure) asks about symptoms such as itching, bleeding, and skin flakiness
The DLQI (Dermatology Life Quality Index) looks at how eczema affects patients socially and psychologically.
These tools are valuable, but they do not specifically capture neurodiversity-related challenges. From clinical experience, individual patient stories shared online, and small studies, we think that neurodiversity may shape how eczema is experienced and managed in everyday life. These may include (but are not limited to):
Sensory sensitivities (like how creams feel or smell).
Difficulties with sleep
Challenges following treatment routines
Barriers to accessing and communicating with healthcare
Impact at school or work
Managing flares
Now, we want to conduct our own research to find out which experiences are most important for neurodivergent people with eczema.
Our first step: a short survey
We have designed a short, open survey. This is available for:
Neurodivergent people with eczema
Parents/carers of neurodivergent people with eczema
The survey asks about different areas of life with eczema including applying treatments, communicating with healthcare professionals, social impact, sensory experiences, sleep, school, and work.
There are no right or wrong answers. You also don’t need to complete every question. If something doesn’t apply to you or feels uncomfortable you can skip it. The purpose of this survey is about your experience, in your own words.
Why is this research important?
By gathering experiences in a structured way, we hope to build a clearer picture of how neurodivergent people live with and manage eczema and identify where current medical practice might need to change or where further research is needed.
At the end of the survey, you can also let us know if you’d like to be involved in further stages of this research project, such as follow-up surveys or online discussions.
Thank you for being involved in this important conversation. Your insights will help to shape future research within Rapid Eczema Trials and ensure eczema care improves for everyone.
Vaibhav Chaganti & Natalie Bonsu
On behalf of the Rapid Eczema Trials team.