Position Statement of the EADV Task Forces With External Experts on Quality of Life Measurement in Hidradenitis...

Hidradenitis suppurativa (HS) has a profound negative impact on patients' Quality of Life (QoL). The European Academy of Dermatology and Venereology (EADV) Task Force (TF) on QoL and Patient Oriented Outcomes and TF on Acne, Rosacea and Hidradenitis Suppurativa (ARHS), together with external experts, decided to provide an updated position statement on QoL measurement in HS. In our previous position statement on HS, we stated that a Dermatology Life Quality Index (DLQI) score of 0-1, corresponding to no effect on patient's life according to the DLQI banding descriptions, may be considered as a difficult to reach but important treatment goal: achievement of this goal has since been used as an efficacy criterion in several clinical trials. For many HS treatment methods, there is still a lack of well-organized randomized clinical trials with sufficient participant numbers in which QoL instruments have been used as outcome measures. The DLQI is the most widely used QoL instrument in HS. Clinical recommendations and treatment efficacy are based on its score grading system and minimal clinically important difference (MCID). The HS-specific QoL instruments HSIA, HSQoL-24, HiSQOL, and QoL-HS have a satisfactory number of items for routine clinical use and short recall periods. HiSQOL and HSQoL-24 have score grading systems and the MCID for HiSQOL has been established. The TF on QoL and Patient Oriented Outcomes and TF on ARHS recommend that QoL be assessed in HS: dermatology-specific and HS-specific instruments may be used alongside each other.