A global, patient-led effort to measure and improve eczema care around the world

First of its Kind Collaboration Uses Data-Driven Approach to Evaluate and Compare Health Systems in 13 Countries

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How are children and adults living with eczema faring worldwide?

The Global Patient Initiative to Improve Eczema Care is a patient organization-led effort to measure the performance of health systems in meeting the needs of people with eczema (atopic dermatitis) and their caregivers worldwide. The initiative is led by Global Parents for Eczema Research and guided by 15 patient organizations from 13 countries. The partnership has produced measures and benchmarks for assessing dimensions of healthcare provision that matter most to patients and policy recommendations for improving care and treatments from the perspective of people who live with eczema.

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Publications

  • Capozza K, Funk M, Hering M, Lang J, Merhand S. et al. Patients' and Caregivers' Experiences With Atopic Dermatitis-Related Burden, Medical Care, and Treatments in 8 Countries. J Allergy Clin Immunol Pract. 2023 Jan;11(1):264-273.e1. doi:
    10.1016/j.jaip.2022.10.032. Epub 2022 Nov 2. Erratum in: J Allergy Clin Immunol Pract. 2023 Sep;11(9):2961-2962. PMID: 36332836. Read more.

  • Capozza K, Vastrup A, Proctor A, Roberts A, Picozza M, Manion R, Talent C, et al. The sound of silence: where are the voices of patients in eczema guideline development? Br J Dermatol. 2022 Dec;187(6):1005-1006. doi: 10.1111/bjd.21822. Epub 2022 Sep 2. PMID: 36052766;
    PMCID: PMC10087290. Read more.

  • Chong AC, Schwartz A, Smith Begolka W, Tullos KZ, Capozza K. Specialist care and mental health is associated with long-term control of atopic dermatitis symptoms: A cross-sectional survey of patients and caregivers in the United States. JAAD Int. 2023 Aug 31;13:112-114. doi: 10.1016/j.jdin.2023.08.016. PMID: 37779557; PMCID: PMC10541459. Read More

  • Capozza K, Tu M, Schwartz A, de Tena Smith ÁL. Atopic dermatitis in Spain: Patient and caregiver experiences with disease burden, care and treatments. Aten Primaria. 2024 Mar 12;56(5):102908. doi: 10.1016/j.aprim.2024.102908. Epub ahead of print. PMID: 38479199; PMCID: PMC10944104. Read More

  • Howie L, Orevillo K, Tu M, Schwartz A, Funk M, Talent C, et al. The burden of atopic dermatitis in Australia: Medical care, treatment satisfaction, financial impact, long-term control and quality of life. Australas J Dermatol. 2024; 00: 1–6. https://doi.org/10.1111/ajd.14299 read more

  • Capozza K, Tu M, Schwartz A, Johnson JL, Ladner M. Patients’ and Caregivers’ Experiences Navigating the Burden of Atopic Dermatitis in Argentina. Medicina. 2024; 60(4):584. https://doi.org/10.3390/medicina60040584

 

The global initiative was supported with funding from Leo Pharma and Sanofi and Regeneron.