RESUMO
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.
RESUMO
Atopic dermatitis (AD) is an inflammatory skin disease characterized by intense itching and highly visible signs, representing a great burden to the patient. Despite its straightforward diagnosis, AD severity and burden can be underestimated in routine clinical practice. This review aims to determine the impact of AD on patients' lives, establish which domains of life are most affected, and identify symptom drivers of AD burden. A systematic literature review was conducted in Pubmed/Medline, Web of Science, and Scopus following Cochrane and PRISMA recommendations. Observational studies published in English or Spanish between January 1, 2018, and August 31, 2022, evaluating the impact of AD and its symptoms from the patient's perspective, were included. Reviewed studies were assessed for quality following the STrengthening the Reporting of OBservational studies in Epidemiology Checklist. A total of 28 observational studies evaluating the impact of AD and its symptoms from the patient's perspective were included in the review. All domains of the AD patient's life were found to be greatly affected, including health-related quality of life (HRQoL), emotional health, sleep disorders, work impairment, health care resource utilization, cognitive function, and development of comorbidities. The more severe the disease, the greater the impact, worsening in patients with moderate and severe AD. Pruritus and pain are reported to be the disease symptoms with the greatest impact. In conclusion, AD impacts several domains of patients' lives, especially HRQoL and mental health. Pruritus and pain are identified as the main drivers of AD impact, suggesting that optimal symptom control may reduce the burden and improve disease management.
