Ingraham Natalie, Hann Lena R, Williamson J Austin, Drew Caleb
Department of Sociology, California State University East Bay, Hayward, CA.
Augustana College, Public Health Program, Rock Island, IL.
Int J Womens Dermatol. 2022 Oct 7;8(3):e049. doi: 10.1097/JW9.0000000000000049. eCollection 2022 Oct.
Hidradenitis suppurativa (HS) is a chronic, inflammatory, debilitating skin disease that impacts an estimated 1 to 4% of the population; women are twice as likely to be diagnosed as men. There is no cure for HS, and many patients face a lifetime of various healthcare appointments, medical interventions, and personal experiences living with the disease.
This study aimed to explore social, emotional, and medical experiences for individuals with HS, and to understand connections between those experiences and quality of life.
Participants (n = 243) in the community-based convenience sample completed a cross-sectional survey about their experiences and quality of life and reported high rates of anxiety, embarrassment, and depressed mood. These and other negative emotions were commonly experienced during interactions with healthcare providers and romantic partners.
Participants who had more negative interactions with providers and partners surrounding their HS tended to experience a lower quality of life.
Limited generalizability due to convenience sampling.
Providers should consider how patients experience patient -provider communication about HS, and how this communication impacts other areas of patients' lives, including quality of life, mental health, and romantic relationships. Future care approaches should prioritize mental health strategies in HS patients' care plans, and establish partnerships between dermatology practices and mental health professionals to aid in the multidisciplinary approach recommended for the treatment of HS.
化脓性汗腺炎（HS）是一种慢性、炎症性、使人衰弱的皮肤病，估计影响1%至4%的人口；女性被诊断出患此病的可能性是男性的两倍。HS无法治愈，许多患者一生都要面对各种医疗预约、医疗干预以及与这种疾病相伴的个人经历。
本研究旨在探索HS患者的社会、情感和医疗经历，并了解这些经历与生活质量之间的联系。
基于社区的便利样本中的参与者（n = 243）完成了一项关于他们的经历和生活质量的横断面调查，报告显示焦虑、尴尬和情绪低落的发生率很高。在与医疗服务提供者和浪漫伴侣的互动中，这些以及其他负面情绪很常见。
在围绕HS与医疗服务提供者和伴侣的互动中负面互动较多的参与者往往生活质量较低。
由于便利抽样，普遍性有限。
医疗服务提供者应考虑患者如何体验关于HS的医患沟通，以及这种沟通如何影响患者生活的其他方面，包括生活质量、心理健康和恋爱关系。未来的护理方法应在HS患者的护理计划中优先考虑心理健康策略，并在皮肤科诊所和心理健康专业人员之间建立合作关系，以协助采用推荐用于治疗HS的多学科方法。
