Quality of Life in Hidradenitis Suppurativa: An Update

Abstract

Knowledge on hidradenitis suppurativa/acne inversa (HS) is rapidly increasing. HS has a profound impact on patients and their family life. Several factors, such as comorbidities, unemployment and HS severity, make this impact even more severe. The most widely used instrument to measure this impact is the dermatology-specific DLQI. We also identified six HS-specific health-related quality of life (HRQoL) instruments. Of them, HIDRAdisk, HSIA, HiSQOL and HSQoL-24 are better validated but there is still lack of experience of its use. Several treatment methods showed positive effect on patients’ HRQoL. Surgery remains a method with a substantial positive effect on HRQoL. Several studies confirming a positive effect of adalimumab on the HRQoL of patients with HS were published during the last three years. Data on the influence of several other biologics on HRQoL of HS patients are controversial or based on studies with a small number of patients.

Self-Reported Hidradenitis Suppurativa Severity: Is It Useful for Clinical Practice?

“…Hidradenitis suppurativa (HS) is a burdensome, debilitating, chronic inflammatory dermatosis for which QoL impairment is well documented [5,[7][8][9]. The severity of the disease is commonly assessed and evaluated by a clinician using many available instruments [10][11][12].…”

Hidradenitis suppurativa‐specific, patient‐reported outcome measures

“…Hidradenitis suppurativa/acne inversa (HS) exhibits the highest reduction in QoL among skin diseases, 2 and it does not seem to improve at a similar magnitude as other aspects of the disease over time 3 despite the emergence of effective treatments 4 . In contrast to the establishment of validated, robust, HS‐specific, severity classification criteria and OMI, such as the International Hidradenitis Suppurativa Severity Score System (IHS4), 1 disease‐specific PROM were lately developed and dermatology‐specific and generic tools were only partially validated for HS in the last 2 years (Table 1), 5 with the latter often been not sensitive enough to reflect HS‐related changes in QoL and even showing a poor correlation with OMI 1 . This has been a major obstacle for studies on QoL in HS, and therefore, there is still a lack of high‐quality clinical trials in HS patients where QoL instruments have been used as outcome measures.…”

Hidradenitis Suppurativa: Where We Are and Where We Are Going

“…Due to its chronic nature and frequently occurring relapses, HS has a great impact on the patients' quality of life, deeply affecting social, working, and psychological aspects [2,[7][8][9]. Therefore, early diagnosis is very important for HS patients in order to ensure the best possible course of this stigmatizing and painful disease.…”