Understanding the Lived Experience of Eczema The "Voice of the Patient" Report on the Eczema Patient-Focused Drug Development Meeting 2020

Sly Saint · Aug 16, 2020

On March 18, 2020, the five host organizations jointly released the More Than Skin Deep "Voice of the Patient" report summarizing the September 23, 2019 patient-focused drug development meeting – a novel effort to understand and share the lived experience of patients and caregivers affected by atopic dermatitis, the most common form of eczema.

For the first time ever, adults and children living with eczema and their family members shared riveting descriptions of symptom burdens, challenges managing the disease, and treatment expectations with U.S. Food and Drug Administration (FDA) regulators, drug developers, and researchers. This comprehensive, full-color report shares testimony, data, and photos from the 160 in-person participants, 1,508 respondents to the companion survey, and thousands of virtual attendees participating via webcast. The More Than Skin Deep survey is one of the largest surveys of the eczema community to date. Click here to view the report.
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http://www.morethanskindeep-eczema.org/report.html

the full report is 100 pages long. There is a 2 page summary at the above link.

Sly Saint · May 14, 2023

Experts demand traffic-light labels to show strength of eczema cream

Tubes of eczema ointment should be branded with traffic-light ratings to end confusion about how strong they are, say experts.

The medications, called topical steroids, are relied on by millions Britons – and are a mainstay of treatment for the condition, which causes the skin to become itchy, dry and cracked. But campaigners say patients are 'flying blind' with no easy way of knowing their potency, because, surprisingly, the strength of the drugs is never printed on packaging and rarely in the accompanying patient information leaflet.

Doctors say some patients are unknowingly over-using powerful versions, increasing the risk of agonising withdrawal symptoms when the course of treatment ends.

These include redness, 'burning' pain, excessive skin flaking and severe itching, which patients say are different from normal eczema flare ups – and can be so severe, they trigger insomnia and mental health problems such as anxiety and depression.
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Topical steroids – also known as corticosteroids – reduce inflammation, suppress overactivity of the immune system and narrow the blood vessels, which helps relieve some symptoms, such as itching and pain, alleviating the urge to scratch so the skin can heal. There are more than 100 different types of topical steroid preparations available in the UK, broadly grouped into four categories of potency: mild, moderate, potent and very potent.
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A moderately potent steroid is twice as strong as hydrocortisone one per cent – the mild type – and both are available over-the-counter. Potent steroids are ten times the strength and very potent ones are at least 50 times stronger.

But this basic information is not on packaging – instead, the concentration of active ingredients is printed, usually in per cent. But the potential for confusion is clear: for instance, betametasone 0.1 per cent is a potent steroid that's ten times the strength of hydrocortisone one per cent.
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Topical steroids are typically meant for short-term use of between two and six weeks. For the majority of eczema patients, symptoms will ease in this time. Those with more severe eczema may need to use stronger creams over longer periods which requires monitoring as the risk of side effects increases.

A 2021 MHRA review said withdrawal could occur 'after long-term continuous or inappropriate use of moderate to high potency products'.

Professor Anthony Bewley, of the British Association of Dermatologists and a consultant dermatologist at Barts Health NHS Trust, said: 'A minority of patients using topical steroids find their skin gets worse, not better, and need to apply more. When they stop they suffer severe skin problems. We don't know why but it is mainly seen in people using potent topical steroids for years without supervision.
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full article Experts demand traffic-light labels to show strength of eczema cream (msn.com)

see also
ITSAN – Support for a global community living with Eczema and TSWS

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Understanding the Lived Experience of Eczema The "Voice of the Patient" Report on the Eczema Patient-Focused Drug Development Meeting 2020

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Understanding the Lived Experience of Eczema The "Voice of the Patient" Report on the Eczema Patient-Focused Drug Development Meeting 2020

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Sly Saint Senior Member (Voting Rights)

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