Supporting the Transition to Self- Managed Care in Adolescents and Young Adults With Atopic Dermatitis

National Eczema Association (NEA) Associate Director of Data Science & Research, Allison Loiselle, PhD, discusses why the transition from caregiver-led to self-managed care represents a vulnerable period for adolescents and young adults with atopic dermatitis (AD). Drawing on findings from a recent NEA study,1 she outlines practical strategies for assessing transition readiness, addressing gaps between patient and caregiver perceptions, and supporting confidence and independence in eczema self-management.

The Dermatologist: Why is the transition from caregiver-led to self-managed care a particularly vulnerable period for adolescents and young adults with AD?

Allison Loiselle: This transition often overlaps with a period of significant cognitive, emotional, and social development. Adolescents and young adults are already navigating increasing independence, identity formation, and peer relationships, and managing a chronic condition like AD adds another layer of complexity. There are many aspects of care to balance, such as daily skin care, medications, and trigger avoidance, and learning to manage all of that during this developmental stage can be challenging.

AD also carries an added burden as a visible disease. Many adolescents describe feeling stigmatized, which can affect confidence and engagement with care. Importantly, this transition is also a vulnerable period for caregivers. Parents who were previously responsible for daily tasks, such as applying moisturizers or managing treatments, must gradually step back, which can be difficult for both parties. Letting go of that role is often emotionally challenging for caregivers, particularly when disease control feels uncertain.

The Dermatologist: You used the Transition Readiness Assessment Questionnaire (TRAQ) 6.0 to measure transition readiness. How can dermatologists assess readiness during routine visits without adding significant time burden?

Allison Loiselle: The full TRAQ is a validated tool, but we recognize that it may be too long to incorporate into every clinic visit. Ideally, it could be completed digitally or in the waiting room, but even without that, clinicians can use targeted questions drawn from the tool.

Simple prompts, such as asking whether the patient knows what to do if they experience a medication reaction or whether they can name their medications and doses, can quickly reveal readiness gaps. What matters most is consistency over time. Even asking a small set of questions at regular intervals can help clinicians track progress without adding substantial burden to visits.

The Dermatologist: Your study found that adolescents and young adults report greater readiness than parents perceive. How should clinicians address this mismatch?

Allison Loiselle: It is important to note that this study did not use parent-child dyads; rather, it captured perspectives from adolescents and young adults and parents separately. That design allowed us to hear a broader range of experiences. Prior qualitative work informed the survey and revealed that many adolescents feel confident because they do not fully recognize everything that goes into managing eczema.

For example, a young patient may say they manage their AD independently because they moisturize, without realizing that their parents schedule appointments, refill prescriptions, and monitor triggers. In our study, nearly 90% of adolescents aged 12 to 17 years reported managing their AD on their own, despite many scoring below readiness thresholds.

Clinicians can help by facilitating joint conversations focused on specific skills, determining what the patient feels ready to take on and where caregivers will continue to support. Creating shared goals and a gradual progression plan, such as encouraging the patient to schedule an appointment independently or manage refills, can help align expectations.

The Dermatologist: Which patients are most likely to struggle with transition readiness, and what early signs should clinicians watch for?

Allison Loiselle: In our cohort, younger adolescents, patients with more severe disease, and those not followed by a dermatologist or allergist had lower readiness scores. Younger age is expected, but disease severity raises important questions about whether readiness improves because disease is controlled or vice versa, which is something cross-sectional data cannot fully address.

Clinically, early warning signs include difficulty naming medications or doses, inconsistent adherence when caregivers are not present, or reluctance to discuss side effects independently. These behaviors may be developmentally appropriate in younger children but can signal a need for early transition support in mid-adolescence. We also found that patients diagnosed later, such as in their late teens, may miss opportunities for gradual transition and benefit from more structured education.

The Dermatologist: Fear of treatment side effects and disease variability were major barriers. What practical steps can clinicians take to empower adolescents and young adults with AD and their caregivers?

Allison Loiselle: Parents often worry because eczema changes in severity and location, making self-management feel unpredictable. Structured education can help by clarifying what normal flares look like vs signs of treatment failure and when to escalate care.

Using shared decision-making tools is also valuable. Reviewing risks and benefits in developmentally appropriate language, using concrete percentages when possible, and discussing common side effects and their timelines can improve confidence for both patients and caregivers. These conversations help shift uncertainty into preparedness, which is essential for successful transition to self-managed care.

Reference:

1. Loiselle AR, Johnson JK, Smith Begolka W. Perceived readiness and barriers to self-management in pediatric atopic dermatitis patients and parents. Pediatr Dermatol. 2025 Nov18. Online ahead of print. doi:10.1111/pde.70117

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