OBJECTIVES:

Hidradenitis suppurativa (HS) has one of the greatest impacts on quality of life (QoL) of any dermatological disease. This study explored the patient- and physician-reported burden of HS with and without draining tunnels (dT).

METHODS:

This study used real-world data collected (November 2020–April 2021) from physician surveys, patient surveys, and medical records as part of the Adelphi HS Disease Specific Programme (DSP™). Validated patient-reported outcomes used were the HS QoL (HiSQOL) score, the work productivity and activity impairment questionnaire, and the EQ5D-visual analog scale (EQ5D-VAS). Results are presented descriptively. Patients with missing values for a variable were removed from all analyses involving that variable.

RESULTS:

Of 580 moderate-to-severe HS patients included in this study, 46% (n=264) had dT. For patients with and without dT, mean age of 38.9 and 33.3 years, and 55.3% and 57.6% were female, respectively. From physician-reported data, patients with dT were more likely to experience a great impact on their lives than patients without dT (51.1% vs. 31.3%). Physicians agreed (agreement of 7–10 on a 1–10 scale) that patients with dT were more likely to experience a negative impact on their mental health (66.3% vs. 48.7%) and sexual function (65.5% vs. 50.3%). Patients with dT reported higher ratings on a pain scale from 7–10 (10 indicating worst pain, 28.9% vs. 11.0%), and were more likely to experience worse mood, reduced ability to work, negative feelings about the futures, and a deteriorated financial situation. Overall, patients with dT reported worse QoL (HiSQOL, 22.3 vs. 16.2), greater work impairment (34.0% vs. 25.9%), and worse general health (EQ5D-VAS, 62.9 vs. 72.0).

CONCLUSIONS:

In this group, patients with dT experienced a more substantial disease burden than patients without dT; this provides insight into the impact of dT and highlights the need for effective treatment strategies.