Patient experiences with hidradenitis suppurativa: the Hidradenitis Patient Experience survey

Abstract

Summary Background Better understanding of the experience of people living with hidradenitis suppurativa (HS) is essential to identify gaps in current patient care and inform healthcare decision‐making. Aim To describe the patient experience of individuals with HS, including their path to diagnosis, symptom control, treatments, healthcare utilization, patient needs and impact on quality of life. Methods The Hidradenitis Suppurativa Patient Experience survey was created, extensively reviewed and disseminated through engaging HS‐related patient organizations, physician groups and social media groups. Results In total, 537 respondents completed the survey; the mean age was 38 years (range 14–73 years) and 95% (510 of 537) were female. The mean number of treatment types per respondent was 15, and included antibacterial soaps (93.3%; 431 of 462), avoidance of tight clothing (90.9%; 419 of 462), use of oral antibiotics (79.7%; 368 of 462), nonprescription drugs (79.7%; 368 of 462) and topical antibiotics (77.1%; 356 of 262). Pain was poorly controlled in 46% of respondents (184 of 401). HS had a negative impact on the ability to work and attend school for 81% of respondents (337 of 415), with 59% (245 of 415) missing at least 2 days of work a month and 16% (66 of 415) missing > 11 days of work. The mean number of misdiagnoses per respondent was three and the median time to diagnosis was 10 years. Conclusion Individuals with HS experience a delay in diagnosis and have suboptimal control of the disease. We propose 11 recommendations to improve diagnosis, treatment and quality of life for individuals living with HS.

Hidradenitis suppurativa may impact clothing patterns even in patients with mild disease and symptoms: an observational study

“…Pressure and friction, secondary to clothing, can potentially cause the follicular unit to rupture and exacerbate a patient’s HS 2 . However, current literature investigating the effect of clothing on HS is limited to anecdotal reports and limited quantitative data 2,3 . Moreover, clinical guidelines currently lack evidence to support clothing recommendations 4 .…”

“…In a survey of 110 patients with HS, only 16% of respondents reported tight clothing and friction worsened their HS 4 . In a survey of 537 patients with HS, 18·9% of respondents avoided tight clothing to reduce disease exacerbation and increase comfort 3 . Respondents also reported clothing that restricted their work, social and family lives, and their treatment goals included the ability to wear clothes without worry 3 .…”

“…4 In a survey of 537 patients with HS, 18Á9% of respondents avoided tight clothing to reduce disease exacerbation and increase comfort. 3 Respondents also reported clothing that restricted their work, social and family lives, and their treatment goals included the ability to wear clothes without worry. 3 Contrary to previously published data, our cohort suggests that clothing may have a more extensive impact on patients' HS.…”

“…3 Respondents also reported clothing that restricted their work, social and family lives, and their treatment goals included the ability to wear clothes without worry. 3 Contrary to previously published data, our cohort suggests that clothing may have a more extensive impact on patients' HS. Patient education on expertrecommended clothing choices may help decrease disease burden.…”

“…Finally, HS phenotypes were not assessed in our survey. 6 Rohan Singh iD , 1 Arooj Mohammed iD , 1 Aditi Senthilnathan, 1 Steven R. Feldman iD 1,2,3 and Rita O.…”