Patient Self-Monitoring and Shared Decision-Making in Atopic Dermatitis

In this interview, The Dermatologist speaks with National Eczema Association’s (NEA) Wendy Smith Begolka, MBS, chief program and mission officer, and Isabelle Thibau, MPH, director, EczemaWise growth and implementation, about how structured self-monitoring and patient-reported outcomes can strengthen the partnership between patients and health care providers, enhance disease management, and ultimately improve quality of life for those living with atopic dermatitis (AD).¹

The Dermatologist: How does the unpredictability of AD flares impact patients’ ability to consistently manage their disease over time?

Isabelle Thibau: We know that every person living with AD has a unique experience with it, and even individuals’ flare patterns can change over time. With so many factors that can affect when and how a flare appears, it can often be challenging for people living with AD and health care providers to manage the signs and symptoms and respond with the most appropriate treatment or lifestyle change. We also know from our recent research that what a flare means from the patient perspective can be different from how a clinician defines a flare, potentially leading to gaps in care. Our research confirmed that a flare is more than just the visible signs of disease and many individuals with more severe disease or those who have lived with AD for a long time may have a different baseline of disease activity and, by extension, a different perspective on what it means to flare.^2,3 This is why it can be helpful to have documentation that includes patient-reported information to support more personalized AD disease management.

The Dermatologist: What are some approaches patients can adopt to recognize and respond to early signs of disease flares?

Isabelle Thibau: Individuals who improve their knowledge about AD in general and about their own disease patterns in particular can feel more empowered and confident to manage their flares more independently, perhaps without needing to consult with a clinician as often. Tracking symptoms in real time can be one way to better understand their eczema and serve as a record for future reference. Many people do this by keeping a written journal; others have done this using NEA’s app EczemaWise. Both approaches can then support communication with clinicians to help align on how a patient experiences flares and best manage them when they do happen.

The Dermatologist: How can clinicians approach building patients’ confidence in self-monitoring, especially when disease severity or location is variable?

Wendy Smith Begolka: I appreciate this question because it is due to the highly variable nature of AD that self-monitoring has the potential to be very helpful. It can help focus limited office visit time on determining how well the current treatment approach is working, deciding on any changes, and addressing new questions, rather than verbal recall with the patient or caregiver at the time of the visit. For patients or caregivers who have not engaged in this type of activity, health care providers can provide key direction on what and how often to track, with a goal of how and when this information will be discussed. For example, beginning with tracking itch twice a week for 4 weeks after starting a new treatment could be a good place to see how things are improving or not. There is no one size that fits all with tracking; it can be completely tailored to what is important to the patient and the health care provider to assess real-world status.

The Dermatologist: In what ways can real-time symptom monitoring, such as digital tools or patient diaries, be used to improve shared decision-making and treatment adjustments? 

Isabelle Thibau: This is where we see how the value of patient-reported data really shines, as a single office visit assessment only gives a snapshot in time about how a person’s AD is really being managed. Digital tools such as EczemaWise or other traditional patient diaries can help note symptoms, triggers, and treatments all in one place and provide a much bigger-picture understanding of eczema management and how an individual’s quality of life is being affected. EczemaWise can also help organize patient photos to provide examples of good and bad days without having to scroll through their phone at a visit. The data can have an important role in conversations related to patient goals and treatment adjustments or selections supporting more personalized care, as well as provide benchmarks of progress or unmet needs.

The Dermatologist: Given that the burden of AD is both visible and invisible, what is missing in how clinicians currently assess quality of life in this patient population? Are there tools you recommend to capture unseen impacts?

Wendy Smith Begolka: Much of the burden of AD is invisible in that it can only come from patient self-report. Yet use of patient-reported measures in clinical practice is limited, so there is a big gap between what the affected person is experiencing and the information that is often used to determine how well a treatment approach works. The Harmonizing Outcome Measures for Eczema (HOME) group has already done the heavy lifting to identify tools to use in clinical practice, including different validated tools for itch and disease control, among others.⁴ NEA has included many of those tools in EczemaWise to help patients and their health care providers capture this information more easily and over time. We have also added the SkindexMini tool to assess quality of life, although other tools are available as well to capture this important aspect of disease burden. Regardless of what tool is used, there is great opportunity to turn qualitative assessments into something more quantitative to show and track the disease and treatment journey.

The Dermatologist: How might integrating structured self-monitoring into clinical practice affect treatment outcomes, adherence, and long-term disease control for patients with moderate-to-severe AD?

Isabelle Thibau: Simply having more data about your patient’s lived experience with their disease is going to help you make the  best decisions to get them closer to optimal outcomes. Real life happens; your patient is not always going to be “textbook.” Having a structured approach for patients to share their self-reported symptoms, triggers, treatments, and photos over time can allow you both to assess in a more organized, timely, and accurate way whether a treatment plan needs to be adjusted. Self-monitoring may be particularly helpful for those with moderate-to-severe AD because this level of disease severity can present multiple symptoms and active flares over long periods of time, involve multiple body areas, and require multiple over-the-counter products and  prescription treatments.

The Dermatologist: How can patient self-monitoring support clinical practice and health care providers?

Wendy Smith Begolka: There is the potential for data from patient self-monitoring to benefit health care providers by streamlining office visits or teledermatology appointments, identifying which patients would benefit from a different follow-up schedule, and providing real-world evidence to facilitate prior authorization paperwork so patients get access to needed treatments. Overall, self-monitoring can be a key step in the pathway toward providing more personalized patient care, which can contribute to heightened patient satisfaction. 

References
1. Smith Begolka W, Johnson JK, Thibau IJ. Patient burden of atopic dermatitis and opportunities for real-world self-monitoring. Dermatol Clin. 2024;42(4):537-548. doi:10.1016/j.det.2024.04.007

2. Dainty KN, Thibau IJC, Amog K, Drucker AM, Wyke M, Smith Begolka W. Towards a patient-centred definition for atopic dermatitis flare: a qualitative study of adults with atopic dermatitis. Br J Dermatol. 2024;191(1):82-91. doi:10.1093/bjd/ljae037

3. Drucker AM, Thibau IJC, Mantell B, Dainty KN, Wyke M, Smith Begolka W. Consensus on a patient-centered definition of atopic dermatitis flare. JAMA Dermatol. 2024;160(10):1099-1106. doi:10.1001/jamadermatol.2024.3054

4. Leshem YA, Chalmers JR, Apfelbacher C, et al. Measuring atopic eczema symptoms in clinical practice: the first consensus statement from the Harmonising Outcome Measures for Eczema in clinical practice initiative. J Am Acad Dermatol. 2020;82(5):1181-1186. doi:10.1016/j.jaad.2019.12.055