Online communications among hidradenitis suppurativa patients reflect community needs

Golbari, Nicole M.; Porter, Martina L.; Kimball, Alexa B.

doi:10.1016/j.jaad.2018.08.031

Cited by 14 publications

(8 citation statements)

References 4 publications

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“…A study by Golbari et al 17 reports that some of the activity in online HS forums appears to be made by family and friends. This supports the concept that relatives should be welcomed at the events.…”

Section: Discussionmentioning

confidence: 99%

“…Studies on online HS-forums report that the themes preoccupying patients the most are treatment information, emotional issues and social support. 16,17 Though a private forum can be speculated to hold communicational benefits, the nature of the answers in such online forums do not guarantee quality of scientific standards. An educational event such as the one outlined may thus provide scientific answers up to date, as well as social support.…”

Section: Discussionmentioning

confidence: 99%

“…Social support has been stressed as an important area for patients with HS, 5 and social support has in general been proven to improve compliance and treatment outcome. 18 A study by Golbari et al 17 reports that some of the activity in online HS forums appears to be made by family and friends. This supports the concept that relatives should be welcomed at the events.…”

Section: Discussionmentioning

confidence: 99%

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Sustainable patient education in hidradenitis suppurativa

Christensen

Esmann

Saunte

et al. 2023

JEADV Clinical Practice

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Background Hidradenitis suppurativa (HS) is a chronic inflammatory disease of recurrent painful nodules and sinus tracts mainly located in intertriginous skin areas. HS can cause physical and psychosocial impairments, and patients have a need for information and social support. Objectives An educational event was established to accommodate the aforementioned patient needs. The event presents updated information concerning HS and debates the lived experience of HS. This article outlines our approach to patient education. Methods The educational HS‐event has yearly welcomed patients and relatives at Roskilde hospital since 2010—except in year 2020 due to corona‐legislation. The educational content includes information on HS aetiology, epidemiology, treatment, psychosocial aspects of HS and current research. The team of educators is multidisciplinary and includes patients. Results Twelve thematic patient reported questions and concerns reoccur at the events. They include: The aetiology of HS and lifestyle, daily life, employment and economy, emotions, locations of lesions, heredity, comorbidities, self‐care to alleviate symptoms, treatment, the healthcare system, prognosis and new research. The participants are satisfied with the arrangement. Conclusion Educational activities such as the one outlined in this manuscript provides requested information, coping strategies social support. Studies are needed to investigate if systematic education of HS patients improves subjective and objectives measures. Plain abstract Patient education is an important part of disease management. It is essential to share different experiences and practices of patient education to optimize and inspire future educational programs. This study presents a decade of experiences from an annual event that has educated patients with the skin disease Hidradenitis suppurativa (HS). HS is a chronic inflammatory disease that causes skin abscess, nodules, and substantial scarring. The abscesses are extremely painful and located in areas of the body with skin‐to‐skin contact. Due to the painful condition the disease can cause both physical as well as psychological and social difficulties, and the patient group have a need for medical information and social support. In 2010 Roskilde hospital established an annual educational event for patients with HS and their relatives. The educational content includes general information regarding the disease, medical and surgical therapy options, psychosocial aspects of HS, and the latest scientific research concerning HS. The team of educators includes dermatologists, medical and PhD students, experts in psychology, representatives from the HS Patient Association and patients. In this study we outline our approach to patient education for those with HS and their relatives and present the participants' questions and comments as raised at these events. Arrangements such as this can be used to support the patients with the information needed to better understand their disease, but also to facilitate coping s...

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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Sustainable patient education in hidradenitis suppurativa

Christensen

Esmann

Saunte

et al. 2023

JEADV Clinical Practice

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“…Although this may not provide clinically significant information, it demonstrates the importance of this unanswered question in the care of individuals with HS. Social media support groups are a strong influence for patients with HS [10], so it is important to understand the perceptions of these participants to better understand what they may recommend to fellow HS patients, especially when there is limited data on the topic. Additionally, nearly half of both cigarette smokers and ENDS users reported being unsure of whether vaping was better than or the same as smoking for HS, further underscoring the need for more evidence-based recommendations.…”

Section: Discussionmentioning

confidence: 99%

Electronic Nicotine Dispensing Systems Compared to Traditional Cigarettes in Hidradenitis Suppurativa: A Cross-Sectional Survey of Patient and Dermatologist Perceptions

Poondru¹,

Scott²,

Riley³

2023

Skin Appendage Disord

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Background: Smoking cigarettes can have deleterious effects on hidradenitis suppurativa (HS) disease severity, but little is known about the relationship between vaping electronic nicotine delivery systems (ENDS) and HS severity. Objectives: The aim of this study was to determine the rate of ENDS use in those with HS and the perceptions of HS participants and dermatologists on the relationship between vaping and HS. Methods: Two separate cross-sectional, anonymous, multiple-choice questionnaires were administered. One questionnaire was distributed to those with HS recruited via online HS-related forums. Inclusion criteria were diagnosis of HS, age 18 and over, and residence in USA. The other questionnaire was distributed to currently practicing, board-certified dermatologists recruited via an email listserv. Results: Overall, 302 participants with HS completed the questionnaire. Fifty-six participants (18.5%) smoke cigarettes and 41 participants (13.6%) vape ENDS. One-third of ENDS users (14/41) switched from cigarettes to ENDS after learning of their HS diagnosis, of which 78.6% (11/14) believed that the switch decreased the severity and/or frequency of their HS flares. Fifty dermatologists completed the questionnaire, of whom over half (54%, 27/50) were unsure about the relationship between vaping and HS severity. Conclusions: As cigarette smoking and HS are closely linked, the use of ENDS in HS warrants further study.

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“…Currently, the largest online support group for patients with hidradenitis suppurativa (HS) is on Facebook, and these spaces have allowed patients to assist each other with emotional challenges and other issues. In an analysis of the content of the largest group, the majority of HS group posts focused on social support (20%) and requesting information (i.e., lifestyle issues or specific symptoms) (54%) [ 13 ]. Furthermore, for HS, Facebook Groups can be surveyed for effective pain control therapies [ 14 ] or diets [ 15 ] posted by patients.…”

Section: Facebook and Dermatologymentioning

confidence: 99%

Social Media in Dermatology and an Overview of Popular Social Media Platforms

et al. 2021

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Purpose of Review Social media provides an accessible and increasingly popular avenue for sharing healthcare information, networking, and outreach in dermatology. We provide an overview of prominent social media platforms, also known as applications or apps, as well as a discussion of their influence and implications for the field. Recent Findings The various collaborative features of Facebook, Twitter, Instagram, TikTok, YouTube, Snapchat, and other emerging platforms have proven appealing to organizations and users seeking dermatology-related content and medical advice. However, the potential for propagation of inaccurate or even dangerous information is high. Summary Despite the risks associated with social media usage, dermatology can benefit from opportunities to connect and engage with audiences through these platforms. Dermatologists should be encouraged to increase their presence on multiple social media apps to dispel and counteract misleading posts with evidence-based knowledge.

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Online communications among hidradenitis suppurativa patients reflect community needs

Cited by 14 publications

References 4 publications

Sustainable patient education in hidradenitis suppurativa

Sustainable patient education in hidradenitis suppurativa

Electronic Nicotine Dispensing Systems Compared to Traditional Cigarettes in Hidradenitis Suppurativa: A Cross-Sectional Survey of Patient and Dermatologist Perceptions

Social Media in Dermatology and an Overview of Popular Social Media Platforms

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