The Importance of Patient-Reported Outcomes in Atopic Dermatitis

Thinking Beyond Clear Skin

Atopic dermatitis (AD) is a chronic inflammatory skin condition that has a substantial impact on quality of life (QoL).¹ As the therapeutic landscape for AD continues to evolve, dermatologists have an unprecedented number of therapies available to achieve optimal disease control. The current American Academy of Dermatology guidelines reflect this growth, with recommendations including lifestyle modifications, topical corticosteroids, calcineurin inhibitors, and multiple biologic and systemic therapies.²

Despite these advances, assessing treatment success in AD remains challenging. Clinical trials and routine practice continue to rely heavily on standardized clinician-reported measures, such as the Eczema Area and Severity Index, and validated Investigator Global Assessment for Atopic Dermatitis, and body surface area.^3-5 These tools provide standardized assessments of visible disease severity but do not fully capture the broader patient experience. Symptoms such as pruritus, sleep disturbance, psychological impact, and impaired daily functioning may persist despite improvement in visible cutaneous disease.^6-8 Treatment burden is another important consideration in the overall impact of AD.⁹ Patient-reported outcomes (PROs) provide a complementary approach to assessment by evaluating nonvisible symptoms, QoL, and disease control from the patient’s perspective.¹⁰

Improvement in visible disease is generally associated with improvement in PROs.¹¹ However, these responses do not always occur to the same degree. For example, in phase 3 upadacitinib trials for AD, patients who achieved both high levels of skin clearance and near-complete itch resolution reported greater improvements in QoL and other PROs than those who achieved only one of these targets.¹¹ This highlights the value of evaluating clinician-reported measures and PROs when defining treatment success in AD.

In this article, we discuss the limitations of clinician-reported outcomes in AD and the role of PROs in evaluating disease control and treatment burden. We also present strategies for incorporating these measures into routine dermatologic care.

MEASURING THE PATIENT EXPERIENCE

PROs are outcomes reported directly by patients regarding their symptoms, functioning, and QoL. In AD, these measures provide information that clinician-rated assessments cannot obtain from examination alone. In dermatology clinical trials, PROs are increasingly incorporated alongside investigator-assessed endpoints to better characterize treatment response across multiple aspects of disease burden.¹²

Some commonly used PROs include the Patient-Oriented Eczema Measure (POEM), Dermatology Life Quality Index (DLQI), and pruritus numerical rating scales (NRS).^13-15 The POEM and DLQI are particularly useful in characterizing the frequency of AD symptoms and the overall impact of skin disease on daily activities, relationships, and social functioning.^13,14 The pruritus NRS provides an assessment of symptom severity and may be particularly useful in clinical practice because it is quick to administer and easy to follow longitudinally.¹⁵

Other important patient-reported considerations include sleep disturbance and skin pain, as both are important contributors to overall disease burden and may remain clinically significant even after skin clearance.^16,17 Their inclusion in clinical trials may help broaden the assessment of treatment efficacy beyond visible skin disease.

The challenge is translating these tools from clinical trials into routine clinical practice. Trial protocols can incorporate multiple standardized endpoints at prespecified time points, whereas dermatologists often rely on clinical examinations and gestalt assessments during a limited office visit. A practical approach may therefore be to use a small number of brief PROs, such as an itch NRS, and supplement these with more comprehensive measures, such as the POEM or DLQI, when additional information is necessary. Ultimately, PROs should complement the clinical assessment in AD. Combining the two allows dermatologists to evaluate inflammatory disease activity, symptoms, and the functional consequences that matter most to patients.

WHY PROs MATTER

The use of PROs in AD clinical trials has expanded the way treatment efficacy is evaluated. PROs can assess how quickly symptoms improve and whether those therapeutic benefits are maintained over time.¹⁸ This is particularly useful in patients reporting severe pruritus, sleep disturbance, skin pain, or poor QoL despite improvement in cutaneous disease,¹⁹ which may suggest that disease control remains incomplete regardless of skin clearance. Conversely, early improvement in PROs may represent a meaningful benefit before maximal skin clearance is achieved.¹⁹

These findings can directly inform treatment decisions in clinical practice. Persistent impairment in PROs may prompt a discussion of treatment adherence, treatment burden, or whether the current therapeutic approach should be modified. PROs may also facilitate shared decision-making by identifying which outcomes remain the most important to an individual patient.²⁰ Incorporating these priorities into a treat-to-target approach allows therapeutic goals to extend beyond predefined skin severity thresholds and toward meaningful sustained disease control.

INCORPORATING PROs INTO PRACTICE

The routine use of PROs in AD should prioritize feasibility while maximizing clinical utility. A limited set of validated measures can be obtained at baseline and repeated longitudinally to assess treatment response over time. In practice, these assessments may be completed before the clinical encounter or embedded within the electronic medical record to reduce disruption to clinic workflow. Brief surveys may also be completed in the waiting room so that results are available for review during the visit.

Standardized PROs may also be paired with an individualized treatment goal to contextualize changes in scores. Patient-specific goals, for example, may include improvement in sleep, reduction in pruritus, greater participation in daily activities, or reduced treatment burden. This approach may help translate quantitative measures into outcomes that are directly relevant to the patient.

Persistent symptoms identified through PROs despite improvement in visible disease should prompt reassessment. Ongoing pruritus, pain, sleep disruption, and impaired QoL may suggest residual inflammation or an alternative or concurrent diagnosis, such as paresthesia. PROs can help identify these gaps and guide whether the current management approach should be optimized or modified. Ultimately, successful AD treatment should extend beyond improvement in visible disease. PROs help determine whether clinical response has translated into meaningful improvements in how patients feel, function, and live.