RESUMEN
INTRODUCTION: Hidradenitis suppurativa (HS) is a chronic skin condition causing considerable distress. It impacts mobility, social interaction, and quality of life. In Brazil, there is a notable gap in epidemiological data and patient experiences regarding HS. METHODS: This study, spanning 2019 to 2022, employed netnography to probe the experiences of Brazilian patients with HS. This approach gleans insights from online interactions, offering a direct view into patients' lives. RESULTS: Notably, the data illuminated the challenges patients face, such as difficulties in obtaining a diagnosis and the complexities involved in managing a chronic, and often debilitating, condition. Furthermore, patients' experiences with various treatments, encompassing antibiotics, biologic agents, lifestyle alterations, surgical procedures, and alternative remedies, were also examined. CONCLUSION: By undertaking a longitudinal analysis of patient interactions, the study aimed to offer a richer understanding of HS, from its diagnosis to its treatment. It underscores the necessity for a more patient-centered approach when managing this condition. We hope that this enhanced understanding can facilitate better care for those affected by HS.
RESUMEN
Background: Hidradenitis suppurativa (HS) is a chronic skin condition. Its complexity and impact on patients highlight the need for multidisciplinary care that can address the physical, psychological, and social aspects. Centers of excellence can ideally provide the necessary infrastructure, resources, and expertise to effectively treat HS. However, there are still no consolidated models of centers of excellence in HS, and establishing their foundations is an intricate research challenge. Purposely, design and co-creation as innovation techniques are helpful approaches to this type of research. Methods: In this study, we conducted a co-creation with consensus among HS specialists to propose the criteria and requirements to establish outpatient centers of excellence of HS in Brazil. We followed a linear process with mixed methods in 6 stages. Results: The process resulted in 10 categories for establishing outpatient centers, including their respective requirements, rationale, and classification. The categories include onboarding and welcoming; infrastructure and procedures; infusion therapy; flows and referrals; staffing; disease management; metrics during diagnosis; metrics during treatment; awareness and advocacy; research and education. Discussion: The idealized outpatient centers can play a role in the complete multidisciplinary treatment for HS and advancing the science of healthcare services by providing a focus for research, training, and translation of findings into practice.