Understanding the Eczema Experience

Sorry, but your browser does not support the video tag. var bptVideoPlayer = document.getElementById(“bptVideoPlayer”); if (bptVideoPlayer) { var cssText = “width: 100%;”; cssText += ” background: url(‘” + bptVideoPlayer.getAttribute(“poster”) + “‘);”; cssText += ” -webkit-background-size: cover;”; cssText += ” -moz-background-size: cover;”; cssText += ” -o-background-size: cover;”; cssText += ” background-size: cover;”; bptVideoPlayer.style.cssText = cssText; var bptVideoPlayerContainer = document.getElementById(“bptVideoPlayerContainer”); if (bptVideoPlayerContainer) { setTimeout(function () { bptVideoPlayerContainer.style.cssText = “display: block; position: relative; margin-bottom: 10px;”; var isIE = navigator.userAgent.match(/ MSIE(([0 – 9] +)(\.[0 – 9] +) ?) /); var isEdge = navigator.userAgent.indexOf(“Edge”) > -1 || navigator.userAgent.indexOf(“Trident”) > -1; if (isIE || isEdge) { fixVideoPoster(); } }, 1000); } var bptVideoPlayButton = document.getElementById(“bptVideoPlayButton”); if (bptVideoPlayButton) { bptVideoPlayButton.addEventListener(“click”, function () { bptVideoPlayer.play(); }, false); bptVideoPlayer.addEventListener(“play”, function () { bptVideoPlayButton.style.cssText = “display: none;”; }, false); } var mainImage = document.getElementById(“mainImageImgContainer_sm”); if (mainImage) { mainImage.style.cssText = “display: none;”; } var mainImage = document.getElementById(“photo-noresize”); if (mainImage) { mainImage.style.cssText = “display: none;”; } var assetGallery = document.getElementsByClassName(“asset_gallery”)[0]; if (assetGallery) { assetGallery.style.cssText = “display: none;”; } var assetGallery = document.getElementsByClassName(“trb_article_leadart”)[0]; if (assetGallery) { assetGallery.style.cssText = “display: none;”; } var assetGallery = document.querySelectorAll(“[src=’https://d372qxeqh8y72i.cloudfront.net/1041730725_web.jpg’]”)[0]; if (assetGallery) { assetGallery.style.cssText = “display: none;”; } } function fixVideoPoster() { var videoPlayer = document.getElementById(“bptVideoPlayer”); var videoPoster = document.getElementById(“bptVideoPoster”); fixVideoPosterPosition(videoPlayer, videoPoster, true); window.onresize = function() { fixVideoPosterPosition(videoPlayer, videoPoster); }; videoPoster.onclick = function() { videoPlayer.play(); videoPoster.style.display = “none”; }; videoPlayer.onplay = function() { videoPoster.style.display = “none”; }; } function fixVideoPosterPosition(videoPlayer, videoPoster, display) { setTimeout(function () { var videoPosition = videoPlayer.getBoundingClientRect(); videoPoster.style.position = “absolute”; videoPoster.style.top = “0”; videoPoster.style.left = “0”; videoPoster.style.width = videoPlayer.offsetWidth + “px”; videoPoster.style.height = (videoPlayer.offsetHeight + 20) + “px”; if (display) { videoPoster.style.display = “inline”; } }, 1010); } (BPT) – Sponsored by Incyte Corporation For millions of Americans living with atopic dermatitis (AD)1, the most common form of eczema, having dry, irritated skin can not only take a physical toll but have a deep impact on a person’s life, with symptoms like persistent itch and discomfort interfering with interpersonal relationships, social life and even mental health2.Acknowledging the lived experiences of people with eczema is critical in addressing their concerns and sparked the concept behind the 2019 patient-focused drug development (PFDD) meeting. For the first time, people living with eczema and their caregivers were provided a forum to share their perspectives with researchers and regulators to address challenges associated with the condition and its treatment options.Wendy Smith Begolka, Senior Vice President of Scientific and Clinical Affairs at the National Eczema Association (NEA), the largest patient advocacy organization in the U.S. solely devoted to all forms of eczema, led discussions at the meeting alongside four other advocacy groups across the community in collaboration with the U.S. Food and Drug Administration (FDA).“Unfortunately, eczema is often underappreciated and misunderstood,” said Smith Begolka. “In addition to providing that comprehensive appreciation for the burden of disease, it was really important for the patient community to talk about current treatments. What are their important unmet needs? And most importantly, now that we have a growing drug development pipeline, what are the things that are most important to them in those treatments?”The Burdens of EczemaA core aim of the PFDD meeting was to gather data to better understand the personal experiences of patients and address the burdens that they face. Alongside live polling at the meeting, a web-based survey of the eczema community was conducted, building one of the largest data sets ever collected exploring the experiences of those living with eczema.In the survey, participants consistently noted that itch, inflamed skin and sleep disruption were the most problematic symptoms of eczema2. Descriptions by participants about the burden of itch went far beyond sensation, noting how it contributes to skin damage, physical harm, shame, sleep loss, difficulty with mood and attention, negative effects on social and intimate relationships, poor school and work performance, negative self-image, depression and anxiety2.“The participants at the meeting describe their itch in a variety of ways. In particular, they talked about why itch is so much more than just itch. It can have many different triggers, it can have varying intensity, it can have varying duration,” said Smith Begolka. “Itch has this ripple effect throughout their lives.”Managing Eczema The forum also provided an important moment for the patient community to talk about eczema management options, with patients and caregivers reporting that the burden of managing eczema was almost as great as the burdens associated with the condition itself2.The survey found that the amount of time people spent managing their eczema correlated with a higher degree of self-perceived burden of disease, with more than half of respondents indicating that they spent at least five hours per week managing their eczema, with some spending over 40 hours a week on their condition2. Yet, despite this time spent, only 13% of those surveyed felt that their eczema was well controlled2.Many challenges with therapies available at the time of the meeting were brought up during the discussion. In fact, 89% of patients and caregivers felt their previous management options had limited effectiveness or even caused further harm2. Nearly half of the survey respondents indicated that because of these concerns, they had discontinued their respective management approaches2.For people living with eczema who need support, Smith Begolka emphasizes that resources are available from patient advocacy organizations such as NEA. “It is really important as part of this process to be open and honest with your healthcare provider about how your eczema is actually affecting you.” Partnering with a trusted healthcare provider on an individualized plan can be a crucial step in proactively managing eczema.For more resources on AD, visit startfromscratch.com; access the full PFDD report and survey at morethanskindeep-eczema.org.© 2023, Incyte Corporation. MAT-DRM-00994 07/23[1] Silverberg JI, Gelfand JM, Margolis DJ, et al. Atopic dermatitis in US adults: From population to health care utilization. J Allergy Clin Immunol Pract. 2019;7(5):1524-1532[2] More Than Skin Deep. Understanding the lived experience of eczema. http://www.morethanskindeep-eczema.org/uploads/1/2/5/3/125377765/mtsd_report_-_digital_file_1.pdf. Published March 2020. Accessed May 2023.