Impact of Social Media on the Health Decisions of Patients with Hidradenitis Suppurativa

Abstract

Introduction/ Background: The complexity of Hidradenitis Suppurativa (HS) as a skin disease that to date has no clear etiology, deficient understanding and familiarity by physicians, delay and misdiagnosis, no curative treatment, difficult symptomatic management, unmet needs of patients, the resulting psychological hardship, led HS patients to search the internet and social media platforms for answers to their daily challenges. This study aims to explore social media's influence on HS patients' health decisions. Methods: An anonymized quantitative survey posted on HS Facebook support group platforms to explore the influence of social media and the knowledge, attitude, and practice of HS patients towards it for their health information and lifestyle. Results: Of 205 qualified responses, 55% searched posted information because they found it helpful, and 46.2% found it to be more informative and aware of HS patients' needs than their healthcare provider. Among other findings, 75.7% think they can find the healthcare solutions they need that their healthcare provider did not provide. Discussion/ Conclusion: HS patients rely on social media for their unmet health needs that are not provided by the healthcare provider and for lifestyle information. The study emphasizes the importance of reliable health information and the dangers of spreading misinformation through unmonitored social media posts. It also highlights the need for healthcare professionals to understand the experiences of HS patients to bridge the gap in knowledge and advocate for policy actions that point out the informational and support needs of these patients.