<b><i>Background:</i></b> Recurring nodules, abscesses, and lesions characterise hidradenitis suppurativa (HS): a chronic, inflammatory skin disorder. Globally the prevalence of HS is estimated to be around 1% of the population. Leakage, pain, and odour from HS wounds require substantial management. Little is known of the personal burdens that routine wound management imposes on the patient. <b><i>Objectives:</i></b> To evaluate how routine HS wound management impacts patients in terms of the time spent changing dressings, the number of dressings required per day, pain experienced during dressing changes, and negative impact on various domains of their personal lives. <b><i>Methods:</i></b> An anonymous online questionnaire was posted on closed social media patient support groups between April and May 2019. Pearson χ<sup>2</sup> test was used to evaluate if Hurley stages influenced the personal impact of wound care routines on patients. Statistical significance was determined as <i>p</i> value <0.05. <b><i>Results:</i></b> In total<i>,</i> 908 people from 28 countries responded. Of these, 81% (<i>n</i> = 734) reported that regular dressing changes negatively impacted on their quality of life. Most patients, 82% (<i>n</i> = 744), experience pain during dressing changes. 16% (<i>n</i> = 142) of patients required five or more dressings daily, and 12% (<i>n</i> = 108) spend over 30 min daily tending to wounds. Patients indicated high levels of dissatisfaction with currently available wound dressings. <b><i>Conclusion:</i></b> HS wound management imposes a substantial personal burden on patients. There is a clear unmet need for HS-specific wound dressings and wound care provisions, and a greater awareness of the condition and its impact is needed among clinicians.
The role of virtual support groups for patients with hidradenitis suppurativa during the COVID-19 pandemic