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. 2024 Feb;14(2):505-519.
doi: 10.1007/s13555-024-01100-8. Epub 2024 Feb 9.

Development of a Patient Journey Map for Improving Patient Experience and Quality of Atopic Dermatitis Care

Gastón Roustán  1 , Marta Loro  2 , Ángel Rosell  2 , Belén Menchen  3 , Olga Vicente  4 , Marta Elosua-González  2 , Juan L Castaño  2 , Catalina Peña  5 , Olga Isidoro  6
Affiliations

Development of a Patient Journey Map for Improving Patient Experience and Quality of Atopic Dermatitis Care

Gastón Roustán et al. Dermatol Ther (Heidelb). 2024 Feb.

Abstract

Introduction: Atopic dermatitis (AD) is a chronic inflammatory skin condition that affects both children and adults. AD increases the risk of developing comorbidities like asthma, allergic rhinitis and food allergies. AD patients face difficulties, including itching, lack of effective treatments, lack of funding and discomfort in seeking a diagnosis or treatment. This study aims to identify the main barriers and opportunities to improve the experience of patients with AD and provide high-quality care.

Methods: Patients, caregivers and healthcare professionals were recruited from the Dermatology Department at Puerta de Hierro Majadahonda University Hospital (Madrid, Spain). Interviews with patients, caregivers and professionals were performed. Participants used storyboards to depict their preferred scenarios for improving healthcare interactions and create a Patient Journey Map.

Results: A total of 15 participants were included in the study. Early symptoms of AD were commonly described as undefined stages. As symptoms worsened, patients and caregivers expressed uncertainty and frustration. Patients became concerned about AD after their first serious flare and started experiencing intense itching, eczema, wounds, shedding or asthma. Topical corticosteroids were used to manage flares, but their effectiveness diminished over time, causing further frustration. Because of the ineffectiveness of their initial treatments, dermatologists observed that patients tended to downplay symptoms and how they affected their quality of life. The specialized treatment of severe AD significantly changed patients' emotional states. Despite AD's chronic nature, patients strived to enjoy remission periods and cope with flares. Psychological and emotional support was crucial for patients and caregivers, a need addressed by the Patients' School initiative at HUPHM hospital.

Conclusion: The severity of AD has a profound impact on patients' lives. Patient and caregiver emotional and social needs can be met by adequate communication, access to effective treatments and comprehensive psychological support.

Keywords: Atopic dermatitis; Eczema; Patient centered; Patient journey map; Patient perspective.

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Conflict of interest statement

Gastón Roustán has been an investigator and/or speaker for Galderma, Pfizer, Abbvie and Sanofi. Marta Loro received speaker honoraria from Sanofi, Novartis, Janssen and Almirall, took part in clinical trials sponsored by Sanofi, Abbvie and Lilly and has received honoraria for her participation in this study. Ángel Rosell received speaker honoraria from Sanofi, Leo Pharma and Abbvie, took part in clinical trials sponsored by Sanofi, Pfizer and Novartis and has received honoraria for his participation in this study. Belén Menchen has participated in conferences, presentations, studies and expert committees organized and funded by Janssen, Leo Pharma, Pfizer, UCB and Novartis. Olga Vicente has received honoraria for her participation in this study and declares no other conflict of interest. Marta Elosua-González has been an investigator and/or speaker for AbbVie, Lilly, Galderma, LEO Pharma, Pfizer, UCB Pharma, and Sanofi Genzyme and has received honoraria for her participation in this study. Juan L. Castaño has received honoraria for his participation in this study and declares no other conflict of interest. Catalina Peña is an employee of Instituto de Experiencia del Paciente. Olga Isidoro is an employee of Laboratorios Galderma.

Figures

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Fig. 1
Dimensions
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Patient Journey Map. Steps to create a Patient Journey Map
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Pre-diagnosis and diagnosis: Barriers, opportunities and action lines identified during pre-diagnosis and diagnosis in specialized care. AD: atopic dermatitis
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Treatment: barriers, opportunities and action line identified during treatment
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Fig. 5
Follow-up: barriers, opportunities and action line identified during follow-up
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Patient Journey Map
See this image and copyright information in PMC

References

    1. Weidinger S, Beck LA, Bieber T, Kabashima K, Irvine AD. Atopic dermatitis. Nat Rev Dis Primers. 2018;4(1):1. doi: 10.1038/s41572-018-0001-z. - DOI - PubMed
    1. Arkwright PD, Motala C, Subramanian H, Spergel J, Schneider LC, Wollenberg A, et al. Management of difficult-to-treat atopic dermatitis. J Allergy Clin Immunol Pract. 2013;1(2):142–151. doi: 10.1016/j.jaip.2012.09.002. - DOI - PubMed
    1. Kowalska-Oledzka E, Czarnecka M, Baran A. Epidemiology of atopic dermatitis in Europe. J Drug Assess. 2019;8(1):126–128. doi: 10.1080/21556660.2019.1619570. - DOI - PMC - PubMed
    1. Barbarot S, Auziere S, Gadkari A, Girolomoni G, Puig L, Simpson EL, et al. Epidemiology of atopic dermatitis in adults: results from an international survey. Allergy. 2018;73(6):1284–1293. doi: 10.1111/all.13401. - DOI - PubMed
    1. Mortz CG, Andersen KE, Dellgren C, Barington T, Bindslev-Jensen C. Atopic dermatitis from adolescence to adulthood in the TOACS cohort: prevalence, persistence and comorbidities. Allergy. 2015;70(7):836–845. doi: 10.1111/all.12619. - DOI - PubMed

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