Navigating the Multidimensional Impact of Living with Hidradenitis Suppurativa: An In-Depth Netnographic Study on Social Media Platforms.

Autor: Bellei EA; Department of Data, Digital, and Innovation, Novartis, São Paulo, Brazil. ericles_bellei@hotmail.com., de Carvalho AVE; Hospital Moinhos de Ventos de Porto Alegre, Porto Alegre, Brazil., Eng BM; Patient Support Program, Novartis, São Paulo, Brazil., Tozato C; Value and Access Division, Novartis, São Paulo, Brazil., de Barros DH; Dermatology Service, Hospital Irmandade Santa Casa de Curitiba, Curitiba, Brazil., Tamashiro EY; Immunology Franchise, Novartis, São Paulo, Brazil., Duarte GV; Instituto Bahiano de Imunoterapia (IBIS), Salvador, Brazil., de Fátima RTR; Department of Data, Digital, and Innovation, Novartis, São Paulo, Brazil., Magalhães RF; School of Medical Sciences, State University of Campinas (UNICAMP), Campinas, Brazil., da Silva RS; Department of Dermatology, Rio de Janeiro State University (UERJ), Rio de Janeiro, Brazil., Cesar WGG; Hospital Alemão Oswaldo Cruz, São Paulo, Brazil., Thies FG; Immunology Franchise, Novartis, São Paulo, Brazil.
Jazyk: angličtina
Zdroj: Dermatology and therapy [Dermatol Ther (Heidelb)] 2023 Nov; Vol. 13 (11), pp. 2797-2815. Date of Electronic Publication: 2023 Oct 04.
DOI: 10.1007/s13555-023-01032-9
Abstrakt: 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.
(© 2023. The Author(s).)
Databáze: MEDLINE
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