Challenges of Patient Engagement in Atopic Dermatitis

Stepping out of the background

Despite the relatively high incidence of atopic dermatitis (an estimated 20% among children and 7 –14% among adults in Europe & USA,¹ lack of targeted therapeutic options and low public awareness contribute to negative patient experiences. In addition, it is only truly in the last few years that atopic dermatitis (AD) has gained recognition outside of those who suffer from it. This is evidenced by the recent introduction of World AD Day in 2018, aimed at building global awareness and acknowledgement of the struggles of those living with the condition. Momentum must continue to build in order for AD to achieve the same level of awareness as that of many other chronic conditions but, for the first time in a long time, people with AD are starting to see a change in the way their condition is treated and managed.²

Historically, the standard of care for treating AD was limited to treatments not focused on the pathogenesis of the disease. Then, Sanofi-Regeneron’s dupilumab, a targeted biologic therapy approved by the FDA in March 2017 for moderate-to-severe patients, paved the way for a new era in systemic AD treatment. Dupilumab is soon to have company. Today, a number of advanced targeted therapies are in development and due to enter the market in the coming years. The availability of these treatments is sure to change the AD space, bringing new and alternative options for patients suffering with moderate-to-severe forms.

In recent years, the medical and scientific communities have placed growing emphasis on assessing quality-of-life impact of living with a chronic condition.³ This is increasingly incorporated as an important clinical marker of note and trial endpoint. In the case of atopic dermatitis, the new treatment options — informed by a better understanding of the disease pathology –— hold the promise of addressing the burden of itch and reduced sleep that AD patients are all too familiar with.

To better understand the AD patient-doctor dynamic and to identify opportunities to optimize patient outcomes, we draw on insights from Ipsos’ Syndicated Atopic Dermatitis Patient Communities (online qualitative communities of patients with moderate-severe forms of atopic dermatitis) in EU5 and Canada, in conjunction with doctors’ feedback via Ipsos’ Syndicated Atopic Dermatitis Therapy Monitor (see ”About the Research” for details on both studies).

The undesired influencer

As a condition characterized by periods of remission and relapse, it is no surprise that lack of control is a well-documented aspect of living with AD.⁴ This is supported by insights from Ipsos’ AD Patient Community. While personal experiences of AD differ, many patients tell of the unpredictable nature of AD and a life dictated by their skin. Individual participants have described being unable to dress as they wish, eat what they like or partake in the activities they want to.

Whilst in many ways this may be influenced by the allergic component and etiology of the condition — in other words, the need to avoid triggers at all costs — there is no denying that some Community patients confer a degree of blame on the outside world, from which many go to great lengths to hide their AD. In open conversations with participants, we heard descriptions of feeling judged by sores on the skin, accounts of unsolicited opinions from others and the indefatigable question, “Have you tried…?”. When asked to provide images for a ”mood board” about their AD, we saw representations of isolation, shame and mental exhaustion – albeit with some indications of hope for the future. Although good days reportedly brought periods of normality and flexibility, bad days saw many submit to their condition and their desire to hide away from the world. The quest for normality that we observed in this study is a typical goal for many living with a relapsing chronic disease — but it’s one that poses a clinical challenge as the variation in each individual’s definition of ”normal” has important implications for measuring their level of control.⁵

Interestingly, for many, life with AD was not how they pictured it at diagnosis. When asked to write a letter to their condition, some recalled dismissing it as a temporary diagnosis, a ”one-time thing,” but went on to find it rooted in all aspects of their lives. Over time, they had come to experience less autonomy, a drop in confidence and a realization that AD is here to stay. Although some signed off as victim or prisoner, however, others gave a message of defiance to their AD.

How well do doctors know their AD patients?

Data from Ipsos’ Syndicated Atopic Dermatitis Therapy Monitor, based on 210 dermatologists providing real-world data on AD patients treated between May-July 2020 (see ”About the Research”) suggest a potential disparity in ascertaining disease control when evaluating treatment efficacy. 66% of moderate-severe AD patients reported on by our sampled doctors are considered ”controlled” under their current treatment regimen (by doctor interpretation). However, the proportion of reported ”controlled” patients who continue to experience a flare suggests there may be a degree of subjectivity on the part of the doctor.

Additional challenges in quantifying this potentially subjective parameter become apparent when evaluating clinical testing in the reported patient sample. 38% of the moderate-severe patients present with either an unknown score or have not had a test in the last year for the three most widely used parameters captured in our study (EASI, DLQI and SCORAD). Use here is typically adopted in those reported patients at the most severe end of the spectrum, who are already treated with a biologic. Hence, we see potential for missed candidates for targeted therapy.

Further challenges rear their head from the patient side as findings from our Community study highlight patients’ hesitancy in raising flare-ups and symptoms with their medical team unless they are simply unable to manage. Some Community participants reported that concerns and attempts to detail symptoms and flare-ups had been dismissed during conversations with their doctor — a case of ”there’s nothing we can do.” Accordingly, their reports of what they said during consultations versus what they were thinking often differed.

At the same time, the therapeutic landscape for AD has been equally restrictive for doctors. They have simply not had the tools at their disposal to treat AD in the way they have for other dermatological conditions, such as psoriasis, where targeted therapeutics have been available for use since 2004 [6]. Additionally, of late, disruption from the COVID-19 pandemic may have further contributed to this. As empathy and clear communication present as a proxy indicator of doctors’ competence and skill [7], undoubtedly how patients feel about the interaction is a fundamental point of consideration when looking towards future patient engagement in the AD arena.

Less talk, more action

As Patient Community insights highlight the day-to-day struggle of adapting to life with AD, it is no surprise that ”quality of life” ranks as the top treatment goal for doctors treating the patients reported on in the AD Therapy Monitor. Appeasing itch and achieving remission were also frequently mentioned. When analyzing treatment patterns among reported moderate-severe AD patients by the goal outlined by the sampled doctor, however, treatment usage is fairly consistent across the board. Between 44% and 47% of reported moderate-severe patients are treated with a topical therapy, regardless of the goal outlined by their doctor on the patient record form. In our view, this goes some way to suggest that goals do not, or cannot, necessarily translate into prescribing habits.

The apparent disconnect between treatment goals in the minds of sampled doctors and the associated prescribing in the AD patient sample is corroborated by some of the Patient Community feedback on treatment consultations. Many participants were of the opinion that they were being prescribed treatments without a true explanation of why, further highlighting the impact of doctors operating with sub-satisfactory treatment options.

Future outlook

While it is undoubtedly an exciting time in the atopic dermatitis therapy space for doctors and patients alike, the points raised in this paper suggest the need to raise the patient voice in order to optimize their engagement in future treatment plans. Whilst on face value the imminent expansion in treatment options is beneficial to both patients and doctors, the conversation between the two parties may need to be reframed in order to ensure information exchange is optimally fueling treatment decisions. On the part of patients, a long-standing tendency of some to ”hide” their condition, coupled with a potential disconnect with HCPs, are key obstacles for consideration. On the part of doctors, a history of typically only having access to non-targeted therapies for their AD patients will now be subject to change. As these new treatment options enter the fray, making sure that news of their availability permeates appropriately throughout both the doctor and patient communities, as well as ensuring doctors are extracting enough information from their patients to accurately identify potential candidates for these options, are important considerations for pharma going forward. Optimizing these relationships will help ensure access to the most effective treatments, and improve the lives of those living with AD.

Hannah Brown & Elizabeth Baynton, Ipsos Global Autoimmune Therapy Monitors.

To read the full version of this article, visit https://www.ipsos.com/en/re-engaging-silent​

About the research

Ipsos’ Syndicated Atopic Dermatitis Patient Community is an online qualitative research community of moderate-severe Atopic Dermatitis patients in the EU5 and Canada who chose to participate. Patients are screened to ensure a Community that reflects patients taking a range of prescription therapies for their AD with varying time since diagnosis. Data used in this article were from May 2020, among ~150 patients in UK, France, Germany, Italy, Spain & Canada.

The Ipsos Global Atopic Dermatitis Therapy Monitor is a doctor-reported syndicated patient record database, capturing prescribing of both topical and drug treatments in AD. Participating doctors are required to treat a minimum number of AD patients in a typical quarter and be the primary decision-maker for their patients. Each wave, participants provide demographic information, de-identified information on a predefined quota of patients seen prospectively (Patient Record Form). Data used in this article were provided by 210 dermatologists in EU5 (~42 in UK, France, Germany, Italy and Spain), reporting on 1068 moderate-severe AD patients seen in consultation between May-July 2020. Data were collected online. Data are © Ipsos 2020, all rights reserved.

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