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. 2026 Jan;16(1):391-403.
doi: 10.1007/s13555-025-01587-9. Epub 2025 Nov 8.

Patient and Caregiver Perceptions on Education and Treatment Needs in Atopic Dermatitis from an International Survey

Kristen Willard  1 , Špela Novak  1 , Peter A Lio  2 , Mark Luttmann  1 , Gretchen McCreary  1 , Ghulam Mustafa  3 , Ruth Tal-Singer  4
Affiliations

Patient and Caregiver Perceptions on Education and Treatment Needs in Atopic Dermatitis from an International Survey

Kristen Willard et al. Dermatol Ther (Heidelb). 2026 Jan.

Abstract

Introduction: Patient education initiatives for atopic dermatitis (AD) improve medication adherence, treatment satisfaction, severity of disease, and quality of life. An international survey was conducted to better understand the journey of diagnosis and treatment, unmet needs, and educational preferences of patients and caregivers for children diagnosed with AD residing in the US, Europe, Japan, and the Gulf region.

Methods: A cross-sectional, anonymous, multilingual online survey was conducted from December 2024-January 2025. Eligible individuals were aged ≥ 18 years and either a patient diagnosed with AD by a medical professional or a caregiver for a child ages 6-12 years with AD.

Results: Of the 1103 survey participants (68% adult patients; 32% caregivers), 56% were from the US, 25% from Europe, 13% from the Gulf region, and 6% from Japan. Over half (61%) found it easy or very easy to find information on AD; however, responses indicated an interest in improved content of available AD education. Almost half (46%) indicated it would be beneficial to have a list of questions to take to their doctor's appointment, 42% wanted more information about AD triggers, and 40% wanted a way to communicate the impact of AD to their doctor. For new medications, participants wished to understand safety, mechanism of action, duration of treatment, and the possibility of freedom from symptoms.

Conclusion: Patient and caregiver education in AD is essential for improving disease management and often-compromised quality of life. While access to disease information was reasonably high, there is a clear opportunity to improve and refine AD education content and provide actionable, patient-centered tools.

Keywords: Atopic dermatitis; Diagnosis; Eczema; Education; Survey; Tools.

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Conflict of interest statement

Declarations. Conflict of Interest: Ruth Tal-Singer is a retiree and shareholder of GSK and reports personal fees from AstraZeneca, Boehringer Ingelheim, ENA Respiratory, Roche, Vocalis Health, Teva, ImmunoMet, Renovion, Samay Health, GSK, Italy&Beyond, COPD Foundation, Global Skin, and the Global Allergy and Airways Patient Platform. Ghulam Mustafa has nothing to disclose. Peter A. Lio reports being on the speaker's bureau for AbbVie, Arcutis, Eli Lilly, Galderma, Hyphens Pharma, Incyte, La Roche-Posay/L’Oreal, Pfizer, Pierre-Fabre Dermatologie, Regeneron/Sanofi Genzyme, and Verrica; reports consulting/advisory boards for Alphyn Biologics, AbbVie, Almirall, Amyris, Apogee, Arcutis, ASLAN, Astria Therapeutics, Boston Skin Science, Bristol-Myers Squibb, Burt’s Bees, Castle Biosciences, Codex Labs, Concerto Biosci, Dermavant, Eli Lilly, Galderma, Kenvue, LEO Pharma, Lipidor, L’Oreal, Merck, Micreos, MyOR Diagnostics, Pelthos Therapeutics, Regeneron/Sanofi Genzyme, Sibel Health, Skinfix, Soteri Skin, Stratum Biosciences, Sun Pharma, Theraplex, Thimble Health, UCB, Unilever, Verdant Scientific, Verrica, and Yobee Care; has stock options with Alphyn Labs, Codex Labs, Concerto Biosci, Soteri Skin, Stratum Biosciences, Thimble, Yobee Care, and Verdant Scientific; has a patent pending for a Theraplex product with royalties paid; and is a Board member and Scientific Advisory Committee Member emeritus of the National Eczema Association. Mark Luttmann is a retiree and shareholder of GSK and reports personal fees from the COPD Foundation. Kristen Willard, Špela Novak, and Gretchen McCreary declare no competing interests. Ethical Approval: Before beginning the survey, invited individuals provided their consent to participate. An institutional review board exemption for the survey was obtained from a US-based central IRB (BRANY, Lake Success, NY; IRB00010793; 24-65-1643) since the survey research team was based in the US. The IRB exemption was granted under category #2, as detailed in 45 CFR 46.104(d). The survey was performed in accordance with the Declaration of Helsinki.

Figures

Fig. 1
Fig. 1
Participants reported a frequency of their (or their child’s) atopic dermatitis symptoms and b level of difficulty in managing their (or their child’s) atopic dermatitis (n = 1090 responded)
Fig. 2
Fig. 2
Percentage of participants reporting aspects of daily life affected by their (or their child’s) atopic dermatitis (n = 1087 responded). Participants could select multiple options
Fig. 3
Fig. 3
Percentage of participants reporting their source of information about atopic dermatitis or atopic dermatitis treatments in the last 12 months (n = 1087 responded). Participants could select multiple options. AD atopic dermatitis
Fig. 4
Fig. 4
Information desired by participants that would make interactions with their health care professional (HCP) easier or help improve their ability to manage atopic dermatitis (AD) (n = 1077 responded). Participants could select multiple options
Fig. 5
Fig. 5
a Information desired by participants about a future treatment that could provide long-term control of atopic dermatitis or prevent flare-ups and b information or characteristics that would make a participant consider trying a newly approved treatment for atopic dermatitis (n = 1082 responded). Participants could select multiple options. AD atopic dermatitis
Fig. 6
Fig. 6
Word cloud compiled from participant answers to “In your own words, what would long-term control of chronic atopic dermatitis (AD) mean to you?” (n = 513). Word size reflects the frequency of occurrence within participant narratives. Larger words indicate higher mention frequency
See this image and copyright information in PMC

References

    1. Tian J, Zhang D, Yang Y, Huang Y, Wang L, Yao X, et al. Global epidemiology of atopic dermatitis: a comprehensive systematic analysis and modelling study. Br J Dermatol. 2023;190:55–61. - DOI - PubMed
    1. Bridgman AC, Block JK, Drucker AM. The multidimensional burden of atopic dermatitis: an update. Ann Allergy Asthma Immunol. 2018;120:603–6. - DOI - PubMed
    1. Bukstein DA, Friedman A, Gonzalez Reyes E, Hart M, Jones BL, Winders T. Impact of social determinants on the burden of asthma and eczema: results from a US patient survey. Adv Ther. 2022;39:1341–58. - DOI - PMC - PubMed
    1. Whiteley J, Emir B, Seitzman R, Makinson G. The burden of atopic dermatitis in US adults: results from the 2013 national health and wellness survey. Curr Med Res Opin. 2016. 10.1080/03007995.2016.1195733. - DOI - PubMed
    1. Vakharia PP, Chopra R, Sacotte R, Patel KR, Singam V, Patel N, et al. Burden of skin pain in atopic dermatitis. Ann Allergy Asthma Immunol. 2017;119:548-52.e3. - DOI - PMC - PubMed

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