Communicating with health providers and romantic partners: The impact of negative emotions on quality of life for individuals with hidradenitis suppurativa

Abstract

Background: 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.Objective: 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. Methods: 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. Results: Participants who had more negative interactions with providers and partners surrounding their HS tended to experience a lower quality of life. Limitations: Limited generalizability due to convenience sampling. Conclusion: 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.

“It’s Like Having an Uncontrolled Situation”: Using Body Maps to Understand the Embodied Experiences of People with Hidradenitis Suppurativa, a Chronic Dermatological Condition

“…Some also highlighted areas of hope and gratitude. These reflect themes in the existing social science literature about HS's influence on lived experiences and quality of life (Howells et al 2021;Ingraham et al 2022).…”

“…A total of 401 individuals began the survey; 263 completed at least 80% of the survey and were included in the final analyses. The survey analysis and results can be found in our first study publication (Ingraham et al 2022).…”