Navigating the Multidimensional Impact of Living with Hidradenitis Suppurativa: An In-Depth Netnographic Study on Social Media Platforms
Abstract 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 20...
| Main Authors: | , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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Adis, Springer Healthcare
2023-10-01
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| Series: | Dermatology and Therapy |
| Subjects: | |
| Online Access: | https://doi.org/10.1007/s13555-023-01032-9 |
| _version_ | 1797647437163134976 |
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| author | Ericles Andrei Bellei André Vicente Esteves de Carvalho Beatriz Magalhães Eng Carla Tozato Danilo Hamilko de Barros Erika Yumi Tamashiro Gleison Vieira Duarte Rafael Toledo Rodrigues de Fátima Renata Ferreira Magalhães Roberto Souto da Silva Wagner Guimarães Galvão Cesar Felipe Garutti Thies |
| author_facet | Ericles Andrei Bellei André Vicente Esteves de Carvalho Beatriz Magalhães Eng Carla Tozato Danilo Hamilko de Barros Erika Yumi Tamashiro Gleison Vieira Duarte Rafael Toledo Rodrigues de Fátima Renata Ferreira Magalhães Roberto Souto da Silva Wagner Guimarães Galvão Cesar Felipe Garutti Thies |
| author_sort | Ericles Andrei Bellei |
| collection | DOAJ |
| description | Abstract 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. |
| first_indexed | 2024-03-11T15:16:19Z |
| format | Article |
| id | doaj.art-eaca60803eb0481faa43cd82aaed7a03 |
| institution | Directory Open Access Journal |
| issn | 2193-8210 2190-9172 |
| language | English |
| last_indexed | 2024-03-11T15:16:19Z |
| publishDate | 2023-10-01 |
| publisher | Adis, Springer Healthcare |
| record_format | Article |
| series | Dermatology and Therapy |
| spelling | doaj.art-eaca60803eb0481faa43cd82aaed7a032023-10-29T12:15:01ZengAdis, Springer HealthcareDermatology and Therapy2193-82102190-91722023-10-0113112797281510.1007/s13555-023-01032-9Navigating the Multidimensional Impact of Living with Hidradenitis Suppurativa: An In-Depth Netnographic Study on Social Media PlatformsEricles Andrei Bellei0André Vicente Esteves de Carvalho1Beatriz Magalhães Eng2Carla Tozato3Danilo Hamilko de Barros4Erika Yumi Tamashiro5Gleison Vieira Duarte6Rafael Toledo Rodrigues de Fátima7Renata Ferreira Magalhães8Roberto Souto da Silva9Wagner Guimarães Galvão Cesar10Felipe Garutti Thies11Department of Data, Digital, and Innovation, NovartisHospital Moinhos de Ventos de Porto AlegrePatient Support Program, NovartisValue and Access Division, NovartisDermatology Service, Hospital Irmandade Santa Casa de CuritibaImmunology Franchise, NovartisInstituto Bahiano de Imunoterapia (IBIS)Department of Data, Digital, and Innovation, NovartisSchool of Medical Sciences, State University of Campinas (UNICAMP)Department of Dermatology, Rio de Janeiro State University (UERJ)Hospital Alemão Oswaldo CruzImmunology Franchise, NovartisAbstract 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.https://doi.org/10.1007/s13555-023-01032-9Hidradenitis suppurativaQuality of lifeGlobal burden of diseaseSocial mediaPatient satisfactionHealthcare innovation |
| spellingShingle | Ericles Andrei Bellei André Vicente Esteves de Carvalho Beatriz Magalhães Eng Carla Tozato Danilo Hamilko de Barros Erika Yumi Tamashiro Gleison Vieira Duarte Rafael Toledo Rodrigues de Fátima Renata Ferreira Magalhães Roberto Souto da Silva Wagner Guimarães Galvão Cesar Felipe Garutti Thies Navigating the Multidimensional Impact of Living with Hidradenitis Suppurativa: An In-Depth Netnographic Study on Social Media Platforms Dermatology and Therapy Hidradenitis suppurativa Quality of life Global burden of disease Social media Patient satisfaction Healthcare innovation |
| title | Navigating the Multidimensional Impact of Living with Hidradenitis Suppurativa: An In-Depth Netnographic Study on Social Media Platforms |
| title_full | Navigating the Multidimensional Impact of Living with Hidradenitis Suppurativa: An In-Depth Netnographic Study on Social Media Platforms |
| title_fullStr | Navigating the Multidimensional Impact of Living with Hidradenitis Suppurativa: An In-Depth Netnographic Study on Social Media Platforms |
| title_full_unstemmed | Navigating the Multidimensional Impact of Living with Hidradenitis Suppurativa: An In-Depth Netnographic Study on Social Media Platforms |
| title_short | Navigating the Multidimensional Impact of Living with Hidradenitis Suppurativa: An In-Depth Netnographic Study on Social Media Platforms |
| title_sort | navigating the multidimensional impact of living with hidradenitis suppurativa an in depth netnographic study on social media platforms |
| topic | Hidradenitis suppurativa Quality of life Global burden of disease Social media Patient satisfaction Healthcare innovation |
| url | https://doi.org/10.1007/s13555-023-01032-9 |
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