New study finds low treatment satisfaction, poor control of eczema symptoms, high psychosocial burden and clear gaps in patient-centered care for eczema patients worldwide.
The Global Patient Initiative to Improve Eczema Care (GPIIEC), a partnership of eleven patient organizations, today (6 April 2022) released a global report of eczema patient care in eight countries: Australia, Canada, Denmark, France, Italy, Germany, United States, and the United Kingdom. National Eczema Society contributed views and experiences of people with eczema from the UK.
The Initiative is a global collaboration to establish common measures to assess the responsiveness of health systems to the needs of patients and their caregivers, and to identify opportunities for improvement.
Eczema is a long-term relapsing inflammatory skin condition that impacts approximately 15% to 20% of children and 1% to 3% of adults globally, resulting in a significant patient burden and high demand on health care systems. A global survey by the GPIIEC that received over 3,000 responses found that patients in every country, and particularly those who lived with moderate to severe eczema, are struggling to achieve long-term control of their eczema symptoms and report limited satisfaction with current treatments.
Survey respondents from the UK, both adults and parents of children with eczema, reported the lowest or low scores on the measures for long-term control of eczema symptoms, satisfaction with eczema treatments, patient education, shared decision making and life span trade-off.
Poorly controlled eczema, which does not respond well to current treatments, has a substantial impact on patients’ health-related quality of life. Based on adult patients’ descriptions of their health, they would be willing to sacrifice between 18-38% of their remaining life span in order to be restored to perfect health. Key drivers of lower quality of life were the pain and discomfort of eczema and the mental health impacts such as anxiety and depression.
Moderate to severe eczema is complex and chronic, demanding a high degree of patient involvement in ongoing symptom management. However, education and training for this role is minimal and patient input into treatment decisions is lacking in almost every country surveyed. Interestingly, shared decision making, defined as asking patients and caregivers about their priorities during a medical visit, was predictive of symptom control. This finding suggests that such involvement may improve medical care and outcomes, and serves as a target for improvement for health systems in each country.
About Global Patient Initiative to Improve Eczema Care (GPIIEC)
GPIIEC is a patient organization-led effort to measure the performance of health systems in meeting the needs of people with eczema (atopic dermatitis) and their caregivers using a common methodology to allow for direct comparisons. For more information: www.improveeczemacare.org
Last updated 01.06.21
We will continue to update this page as new information that may be relevant to people with eczema comes to light. For more general information on Covid-19, please see the NHS website.
Do Covid-19 vaccines affect eczema?
To date, there is no robust evidence to indicate that Covid-19 vaccines make underlying skin conditions, including eczema, worse.
We have heard from a number of people who have told us that their eczema has worsened or re-appeared after receiving a Covid-19 vaccine. If you experience a side effect after receiving one of the vaccines, including worsening of your eczema, we encourage you to report it to the Medicines & Healthcare products Regulatory Agency (MHRA)’s Coronavirus Yellow Card reporting site. Alternatively, report it to your GP. By doing this, an evidence base can be built up regarding the vaccines and eczema.
SECURE-AD Patient Survey – how does Covid-19 vaccination affect people with eczema?
The SECURE-AD research team is running a survey to gain more insight into how the pandemic affects people living with atopic eczema. They are very interested to find out how people living with atopic eczema feel about and experience Covid-19 vaccinations. More information on the survey can be found here. To complete the survey, please go to the SECURE-AD website. Thank you!
Can people on treatments that affect the immune system take Covid-19 vaccines?
People taking systemic treatments that affect the immune system (for example, prednisolone, azathioprine, ciclosporin, methotrexate, mycophenelate mofetil and dupilumab) are advised to avoid ‘live’ vaccines. The three Covid-19 vaccines that are currently being rolled-out in the UK are not ‘live’ vaccines and have no Covid-19 virus in them. This means that people on treatments that affect the immune system can take them.
We don’t have enough information at the moment to know whether being on an immunosuppressant or biologic treatment will reduce the effectiveness of the vaccines.
People taking systemic treatments that affect the immune system are unlikely to need to stop taking their treatment (or delay starting new treatment) in order to take one of the Covid-19 vaccines. Check with your doctor if you’re unsure.
For more information on eczema, treatments that affect the immune system and the Covid-19 vaccines, please see the British Association of Dermatologists’ Covid-19 Provisional Guidance on Vaccination and the Government’s Green Book Covid-19 Provisional Guidance.
Which types of face coverings are the most eczema-friendly?
Face coverings made from 100% cotton that can be washed regularly are probably the most eczema-friendly type of covering. Cloth ear loops are less likely to irritate the skin than elastic ones. Also consider coverings that tie around the back of the head. ‘Mask headbands’ or hats with buttons are another option. With these, the elastic loops around the buttons rather than your ears. ‘Neck gaiters’, ‘buffs’ or ‘tube scarfs’, which are basically a tube of material, might suit too – if 100% cotton.
Make sure the covering fits snugly around your nose and mouth but isn’t tight.
Avoid applying ointment emollients to the face shortly before you put on a covering, as they might make the face too hot.
Supplier suggestions:
- Greenfibres sells 100% organic cotton face masks.
- PeopleTree sells 100% organic cotton face masks.
- Pure Cotton Comfort sells organic cotton face masks for adults and children.
- Skinnies sells viscose face masks with cloth rather than elastic ear loops.
- Spirit of Nature sells 100% cotton face masks.
- Etsy has lots of different types of face coverings for sale. Search for the type you’re interested in.
- ‘Handybands’ from Seasalt have been recommended to us by a Facebook follower. They can be used as face coverings as well as head bands. Organic cotton face masks are also available from Seasalt.
- There are lots of guides and video tutorials showing you how to make different types of face covering, for example: BBC, YouTube.
If you have severe facial eczema that is made worse by wearing a face covering, the Government has exemption badges and cards on its website that you can print out.
How can I mitigate the effects of frequent hand-washing?
We recommend that people with eczema follow the government guidance to wash hands with soap and water, rather than an emollient soap substitute, as much as practically possible. Soap is considered to be more effective than emollient at breaking the lipid envelope surrounding coronavirus particles, and removing the virus from the skin.
Frequent washing of hands with soap can, however, cause problems for people with eczema, including dry skin and hand eczema. It is very important people find ways of managing dry skin and hand eczema that may be caused or worsened by frequent washing with soap.
Strategies for this include:
- After washing hands with soap and water, re-wash using emollient to help protect the skin.
- Use emollients to moisturise the hands after washing and at other times during the day when the skin feels dry and sore.
- Dry hands well after washing by gently patting them dry, not rubbing. When drying your hands, take special care between the fingers where the skin is more prone to dryness and cracking, and build-up of soap residue.
- Rehydrate sore dry hands overnight, using an ointment and wearing clean cotton gloves.
- Wear nitrile gloves if you need to handle detergents or other cleaning products that can irritate the skin. These provide a physical barrier for the skin and can be purchased from chemists or from online shops.
- If you develop more severe hand eczema or suspect your skin is infected, you should contact your GP and may need prescription medicine to reduce the inflammation.
If you feel you need to use sanitising gel (which may irritate your eczema), apply your usual emollient afterwards to minimise any irritant effect.
In public places where you can’t avoid touching surfaces, try not to touch your nose, eyes or mouth (or your child’s) because the virus gets in through mucous membranes.
What are the most eczema-friendly soaps?
We asked our followers on our social media channels which soaps they would recommend. Not all products will suit everyone, but people with eczema have said the following brands/products have worked well for them:
- Dove
- Faith in Nature
- Simple
- Olive oil soaps
We don’t recommend applying olive oil to the skin as it can damage the skin barrier, but olive oil soaps seem to be well-tolerated by many people with eczema who responded to our request for soap recommendations.
How can I see a GP or dermatologist?
Please don’t delay in getting healthcare. If you need urgent medical help and it’s not an emergency, contact your GP or NHS 111 online or telephone NHS 111 first. Your GP practice should offer online, telephone and video consultations. If you are invited in for a face-to-face appointment, infection control measures are in place to keep patients and staff safe.
The Covid-19 NICE guidance says that dermatology departments should ‘optimise the use of teledermatology, such as telephone and video consultations’. If your dermatology appointment has been cancelled due to the crisis, try to find out whether a telephone or video consultation would be possible instead.
Does Covid-19 pose a higher risk for people on systemic treatments?
For more information about systemic treatments for eczema and Covid-19 risk, please see the British Association of Dermatologists’ Risk Stratification Grid. It gives information about Covid-19 risk relating to systemic treatments and other factors.
Am I more likely to develop Covid-19 as a result of having eczema?
There is no evidence to suggest that people with eczema are more likely to develop Covid-19 or to experience a more severe form of the condition if they do develop it.
National Eczema Society is very pleased to have received vital new funding from the Coronavirus Community Support Fund. This award allows us to continue operating our Helpline service and support people with eczema and their families over the coming months. Calls to our confidential Helpline are free and the service is open 10am-4pm weekdays. We provide information, advice and a listening ear and we have been busier than ever supporting people with the additional challenges and worries of managing their eczema during the pandemic.
Like many charities, National Eczema Society has experienced a big drop in income from some traditional fundraising activities, such as the London Marathon, as a result of coronavirus. This new funding enables us to maintain our services while we work hard to develop other funding opportunities.
The Coronavirus Community Support Fund, distributed by The National Lottery Community Fund, was created to help third sector organisations continue to deliver much needed information and support during the ongoing crisis. We are grateful to the Government for making this possible.
To contact our Helpline, call 0800 448 0818 or email helpline@eczema.org. Our team of staff and nurse advisers are here to help.
You may have noticed the new fire warning labels that are being added to emollient packaging. The Medicines & Healthcare products Regulatory Agency (MHRA) has introduced the labelling on all emollients, including paraffin- and non-paraffin-based products.
It is important to understand that emollients are not flammable in themselves, or when they are on the skin. But if bedding, clothing and dressings containing dried emollient residue catch fire, they ignite and burn more quickly and intensely. Any dried-on cream is potentially flammable, including expensive moisturisers.
To catch fire, the bedding and clothing with dried emollient residue must come into contact with a naked flame. The risk of catching fire is highest for people who smoke because they routinely use lighters or matches.
People with eczema should not be put off using emollients because of any misunderstanding of risks. Millions of people use emollients safely every day to manage their eczema and have done so for years. Emollients are a vital first-line treatment for eczema, helping repair and protect the skin barrier. The overall risk of emollient-related fire injuries or deaths is extremely low for those who do not come into contact with naked flames or other potentially flammable heat sources. Doctors and nurses must continue prescribing emollients for eczema – the clinical guidance on emollient use has not changed.
The MHRA reported 61 emollient-related fire incidents including deaths between 2000 and 2018, and in many of these the precise role of emollients was unclear. The majority (around 75%) of the emollient-related fires recorded by the MHRA were caused by lighters, while others involved halogen heaters and incense burners. To set this in context, in England over a 12-month period in 2017-18, there were 7,300 reported non-fatal casualties as a result of fires.
Starting late July 2020, the MHRA is running a publicity campaign about the fire risk of skin creams, including emollients. National Eczema Society contributed to this campaign, which includes a hard-hitting video and information leaflets.
The Society urges people to continue using emollients as advised and take suitable precautions as needed. If you use naked flames and other potentially flammable heat sources, take extra care and avoid using them near clothing, bedding or dressings that may have emollient residue. We also recommend that you wash clothing and bedding frequently, as this is likely to reduce residue build-up even if it does not remove residue completely.
National Eczema Society is asking people with eczema to get behind an important new research initiative called SECURE-AD. You can complete the patient survey here but read on first to check you are eligible.
Coronavirus disease (Covid-19) has impacted us all in different ways and is a global public health emergency. At the moment, we do not know why some people get sicker than others from Covid-19. We also don’t know if people with atopic eczema are affected differently, due to their condition or because of the medication they are taking.
Atopic eczema and Covid-19
Eczema is a common long-term inflammatory skin disease. People with moderate-to-severe eczema may be prescribed medication that influences their immune system. This can be in the form of tablets or injections (systemic medication). The impact of these systemic medications on Covid-19 outcomes is currently unknown.
New patient registry – SECURE-AD
That is why a group of leading doctors and researchers have established a new ‘patient registry, to collect information from and about people with eczema who have experienced Covid-19. This patient registry is called SECURE-AD. People with eczema are being asked to fill in an online survey about their personal experience of Covid-19, and in a separate survey healthcare professionals are being asked to provide information on their patients with atopic eczema who contract Covid-19.
Complete the online survey
If you have atopic eczema and you have also been diagnosed with Covid-19 (or have experienced Covid-19 symptoms), even if this was a while back, you are encouraged to complete the SECURE-AD online patient survey. You will be asked a series of questions about yourself, your medical treatment(s) and how Covid-19 has affected you. This will help researchers understand your personal experience of the infection. The survey takes about 10 minutes and is completely anonymous.
Someone else can complete the survey on your behalf if needed, and parents can complete on behalf of their children. The survey is in English language only although the webpage has translation options. Please also let your doctor know about your Covid-19 infection and ask them to enter your case in the SECURE-AD healthcare professional survey. Both surveys complement each other, are safe and secure, and all the information provided is anonymised.
Help people with eczema stay safe
National Eczema Society is calling for people with eczema in the UK to take part in SECURE-AD if you have experienced Covid-19. This is an international research initiative reflecting the global health emergency and people from around the world are participating. By collecting worldwide information, SECURE-AD will make it possible to better assess the impact of Covid-19 on eczema patients and what influence eczema treatments have on the course of the infection. This in turn will help to guide doctors in their care of people with eczema who are infected with Covid-19.
In addition, SECURE-AD works closely together with the patient registries for other inflammatory conditions, such as psoriasis and rheumatic diseases, allowing researchers to compare results and patient experiences. This makes the impact of the SECURE-AD project even greater and will address the uncertainties we currently face more effectively.
More information
Visit the SECURE-AD website for more information, including the frequently asked questions. If you want to fill in the online survey, you can go directly to the patient survey page. Your support is very much appreciated!
National Eczema Society is a partner organisation for this international research project. The SECURE-AD Steering Group & International Scientific Advisory Committee can be contacted directly at: secureADpatients@gmail.com