ECO – Eczema Care Online

People with eczema are often faced with confusing information about their condition. That’s why researchers have developed Eczema Care Online. A website dedicated to eczema and how to manage it. The team talk about the research underpinning ECO website and how it helps people with eczema.

Too often, people receive unclear, and sometimes even contradictory, information about what the best eczema treatments are and how to use them. We know from speaking with people with eczema, and parents and carers of children with eczema, that the amount of information available can be overwhelming.

To deal with this issue, our unique group of health professionals and researchers joined forces with people living with eczema to develop the ECO website. National Eczema Society participated as a member of the project steering committee. Over the past five years, through close collaboration, we’ve created an evidence-based, user-friendly resource to help people better manage their eczema symptoms.

We launched the finished version of Eczema Care Online after two large clinical trials found that people who used the website experienced a significant improvement in their eczema symptoms. These results have been published in The British Medical Journal and can be read online here.

In 2017, after winning funding from the National Institute for Health Research (part of the NHS), we ran a series of research studies to better understand effective eczema self-management and how to make this information easily accessible online. To ensure our work was patient focused, talked to more than 150 people with eczema and their families about their experiences. This helped us understand the questions they needed answers to the most.

Next, we wanted to ensure our guidance was grounded in scientific evidence. We evaluated and summarised research carried out in more than 100 studies, to answer patients’ questions about flare-control creams (topical steroids). We wanted to know how safe they were, which creams were best to use and how best to use them. We also collated the most up to-date advice about other important aspects of eczema care, such as bathing, diet, and the effects of weather.

Once we had evaluated and summarised all the relevant scientific evidence and advice, we looked at how best to present our findings online in a simple, engaging way. Web designers and people living with eczema helped us create our approachable, user-friendly website. Eczema Care Online greets people with some core information about eczema before they arrive at the main menu, which offers a choice of topics. When you visit the website for the first time, you will be asked whether you are managing eczema for yourself or your child, so you are pointed to the most relevant guidance. Information is presented in either English or Welsh language.

Through developing the site alongside people with eczema, we have learned a lot about what works well. Most importantly, effective eczema management involves proper use of two treatments:

Emollients (moisturisers) are used to maintain control of eczema. Most people will need to use them every day. These creams help to prevent eczema flare-ups by keeping out things that may irritate the skin, softening the skin by locking in water, and making the skin less itchy. Usually, they need to be used at least once a day, even when the skin is clear, to prevent flare-ups. Flare control creams (usually topical steroid creams) are used to get control of eczema flare-ups when the skin becomes more sore or itchy than normal. They are usually prescribed by healthcare professionals. Most people with eczema will need to use them at some point. They are most effective when used as soon as there is a flare-up. They should be used for two days after the eczema is under control. Our studies show that these creams are safe and are usually used for just a few days or weeks at a time. When these two treatments are used well, they will treat most eczema.

We wanted the website to provide a one-stop resource offering clear and reliable information for living well with eczema. Key topics including:

• Using moisturisers to prevent flare-ups

• How to use flare control creams when flare-ups do occur

• Managing sleep issues, stress, and controlling the urge to itch.

Eczema Care Online is aimed at adults, carers, parents of children with eczema, and young people who are starting to manage their eczema on their own. It includes information particularly relevant to younger people, such as how to manage eczema at school, university and work, along with advice about finances and cosmetics. The information is provided without commercial influence and does not advertising any products.

To test the effectiveness of the website, we ran two research trials with more than 600 participants: one with young people managing their own eczema and one with parents or carers. Both groups found that after 12 months, people who used Eczema Care Online saw a sustained improvement in their eczema compared with people using their usual eczema care.

The next aim is to spread the word about Eczema Care Online. We are partnering with GP practices and pharmacies and promoting it through social media, eczema support groups, and eczema societies. We’d love you to help us to get the message out there. Visit us on Facebook or Twitter, like our page, and share the link with anyone else who might find it useful. UoN Online Eczema Research @CebdNottm @ECO_eczema @eczema_study.