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Background  Hidradenitis suppurativa ( HS ) is a chronic, inflammatory, skin condition associated with many comorbidities and often has a substantial impact on patients’ lives.    Objectives  To evaluate symptom burden and health‐related quality of life ( HRQ oL) at baseline in patients with  HS  in an observational, real‐world, clinical setting using several tools including a validated  HS ‐specific instrument.    Methods  This study evaluated  HRQ oL data from the international  UNITE HS  disease registry. Administration of patient‐reported outcome ( PRO ) instruments and collection of data were executed per local regulations. All data were assessed using descriptive statistical methods.    Results   PRO  data from 529 adults and 65 adolescents were evaluated. Most adults (64.5%) and adolescents (73.8%) were classified as Hurley Stage  II  with substantial disease burden at baseline.  HS  had a large effect (mean  DLQI  = 12.6) and moderate effect (mean  CDLQI  = 6.9) on the lives of adults and adolescents, respectively. Approximately 58% of adults and 41% of adolescents had anxiety scores beyond the normal range; 30% of adults and 16% of adolescents exhibited symptoms of depression. Based on  HSSA  and  HSIA  scores, approximately 30% of adults reported a substantial burden of multiple  HS  clinical symptoms and more than 45% reported a significant emotional impact of  HS  that adversely affected their intimate relationships. Only 60% of adults were employed and of those, 64% reported at least some degree of impairment while working because of  HS .    Conclusions  Based on  PRO s collected from patients enrolled in the  UNITE  registry, a real‐world, clinical setting,  HS  has a significant negative impact on the everyday lives of patients affected by this disease.

journal of the european academy of dermatology and venereology

Baseline patient‐reported outcomes from  UNITE : an observational, international, multicentre registry to evaluate hidradenitis suppurativa in clinical practice