Atopic dermatitis (AD) places a heavy burden on patients. Among both pediatric and adult patients, the disease impacts every aspect of the affected individual’s life. Beyond the direct negative impact of experiencing AD symptoms, patients find that the signs and symptoms of the disease can impact social activities, lead to stigma and bullying in kids, and negatively influence work and self-esteem in adults.
Fortunately, we know that getting the disease under medical control can benefit our patients in multiple ways, and we now have the tools to do just that.
Unfortunately, experience and the literature indicate that a sizable proportion of patients remains undertreated. One significant challenge regarding AD is a limited understanding of the disease—even among individuals affected by it. Patients spend countless hours, days, months, and even years adjusting their diet to no avail or trying this cream or that hoping for a cure.
Health care providers may suggest to patients that mental stress may exacerbate the disease or that scratching promotes the disease. This sometimes places a burden on patients to control their own symptoms without properly addressing the underlying inflammatory condition. Misunderstanding of the disease brings shame and guilt for some, and embarrassment for others. The lack of quality sleep due to incessant itching often exacerbates or causes mental health symptoms of anxiety or depression. Atopic dermatitis is an isolating disease, in part due to an historical lack of highly effective therapies.
Having witnessed the all-encompassing burden of AD in many of my patients, I was interested in a novel opportunity to participate in a robust investigation of best practices in AD care led by a quality improvement group at the global firm, KPMG. Based on an ambitious and systematic review of AD centers and of best practices around the globe, this group discovered common obstacles to care and identified potential solutions. I was heartened to learn that all around the globe, there are barriers to access and effective care just like we experience here in Oregon. I am more heartened to know that there are both time-tested and innovative strategies we can use to improve the care of our patients.
The REport
I was pleased to serve on the Global Strategic Group that worked along with the KPMG team and a panel of contributing specialists to document global good practices of care in AD. While the report, Improving Quality of Care in Atopic Dermatitis, was commissioned and funded by Sanofi Genzyme and Regeneron, the companies had no role in collection, management, analysis, or interpretation of data or preparation of the final report.
The report is striking because it reflects the experience and knowledge of more than 30 centers across the globe, including 17 different countries. This is similar to a systematic review, but of centers, instead of the literature. In-person, multi-day analyses documented how each clinic is run, how each university or group performs care, assesses patients, treats patients, and what other resources they use to deliver outcomes for patients. Once identified, good practice interventions were mapped across the patient experience pathway.
Each of these universities has a long experience treating patients with AD and, as a result, has been able to form its own unique approach. It is extremely powerful to put all of the approaches into one document and find the common themes among them. Now, anyone, no matter their location or scholarly resume, can access this document and review the summary of the document and say, “Now I know the steps I can take to improve the care of my patients with this chronic disease today.”
Findings
Challenges. The report identifies numerous gaps in care across various steps in the patient journey. Broadly, these limitations reflect: patient misconceptions; patient or physician lack of understanding of AD; a delay in accurate diagnosis of AD; and hindered access to appropriate, effective treatments.
One specific barrier identified is a lack of understanding of the allergic co-morbidities associated with AD. Oftentimes a lack of coordination between a dermatologist—who sees the skin disease—and an allergist—who sees the food allergy component or asthma—results in suboptimal disease management.
Another common barrier is trying to bring multidisciplinary care to patients with AD and associated comorbidities. Establishing a true multidisciplinary clinic takes a lot of effort and work. There are different ways to provide this more structured and holistic care for patients, and we lay out in the document some easy ways to integrate care across specialists.
Opportunities. Several good practice interventions were recommended based on study and assessment of multiple centers. These interventions address the identified barriers and are laid out in the document along the patient journey. We provide guidance for assessing and diagnosing your patients with AD. Some of that guidance involves more utilization of easy patient reported outcomes (PROs) in your clinic. Visual examination of the skin provides limited information. The physician does not know how AD is impacting a patient in terms of symptoms unless s/he spends some time really talking to the patient or utilizing PROs. Some clinicians are reluctant to use PROs, assuming that collection of information will be too time-consuming. In fact, use of appropriate PRO assessments can save time in your clinic and provide a better understanding of the burden of the disease which helps facilitate a discussion of treatment options for your patient.
This highlights another important aspect of this initiative: Some of the steps that you can take to improve care have different levels of difficulty. For example, some easy changes can be implemented in 10 minutes. Or you can make big structural changes to your clinic to see the most severe patients and provide next level care for patients with more challenging disease.
Across the board, better communication with patients and enhanced education are critical to improving the patient experience. The report provides tips and resources for education for your patients. In the US, many of us rely on the National Eczema Association, which does a good job of supporting patients. However, some centers, such as in Utrecht, Netherlands, have their own educational website and their own structured platform for patients to support each other; there is education delivered peer-to-peer by patients. You can imagine the power of that support.
I encourage dermatologists to review the full report online at atopicdermatitiscare.kpmg.co.uk for more information on these strategies. There, you will also find resources and ideas to improve multidisciplinary teams and build a more holistic approach to the treatment of patients with AD. Imagine real-time consultation with allergy, with psychology; or thinking and asking about co-morbidities and psychological impact on your patients; and making appropriate referrals.
Not “Just Eczema”
There’s no denying that atopic dermatitis may not receive appropriate attention in the healthcare setting. At some primary care offices, eczema may not even be in the top three or four concerns presented to the physician. It is no surprise that there may be a tendency to think, “It’s just eczema.” The reality is that for many patients, eczema impacts their whole lives.
Finally, it is essential that we all commit to monitoring quality. Making changes is a start, but it is essential to understand the impact of those changes. We need to ask ourselves, “Is what I’m doing effective and are my patients satisfied?” The document makes suggestions for assessing quality, as well. Clearly, change is necessary to close the gaps and optimize care. It does not have to be all at once, and you can tailor these tips and action plans to fit your practice. This document provides a good starting point for evaluating your own care practices and learning from a global perspective. Take a look, your patients deserve it.
Access Improving Quality of Care in Atopic Dermatitis online at atopicdermatitiscare.kpmg.co.uk
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