Delayed Diagnosis of Hidradenitis Suppurativa and Its Effect on Patients and Healthcare System

Background: Hidradenitis suppurativa (HS) is a neglected chronic inflammatory disease affecting the skin of axillary, inguinal, gluteal, and perianal body areas. Besides pain, purulent discharge, and destruction of skin architecture, HS patients experience metabolic, musculoskeletal, and psychological disorders. This study determined the delay in HS diagnosis and its consequences. Methods: A prospective, multi-center, epidemiologic, non-interventional clinical trial based on real-world data in Germany. Self-explanatory questionnaires and medical examinations performed by dermatologists of 394 patients with HS, regardless of therapy, were considered. Findings: The average duration from manifestation of first symptoms until HS diagnosis was 10·0±9·6 (mean±SD) years. During this time, HS patients consulted on average more than three different physicians - most frequently general practitioners, dermatologists, surgeons, gynecologists - and faced more than three misdiagnoses. Diagnosis delay was longer in younger and non-smoking patients. In most cases, HS was correctly diagnosed by dermatologists. The longer the delay of diagnosis, the greater the disease severity at diagnosis. Delayed HS diagnosis was also associated with an increased number of surgical interventions, concomitant diseases, and days of work missed. Interpretation: This study demonstrates an enormous delay in the diagnosis of HS, which results in more severe disease. It also shows for the first time that a delay in diagnosis of a chronic inflammatory disease leads to a higher number of concomitant systemic disorders. In addition to the impaired health status, delayed diagnosis of HS impairs the professional life of affected people. Trial Registration: German Clinical Trials Register (DRKS-ID: DRKS00013778). Funding Statement: AbbVie Deutschland GmbH & Co. KG. Declaration of Interests: G.K. has received honoraria for participation in advisory boards, in clinical trials and/or as speaker from AbbVie Deutschland GmbH & Co. KG, Abbott GmbH, Actelion Pharmaceuticals Ltd., Basilea Pharmaceutica Ltd., Bayer AG, Biogen IDEC GmbH, Celgene GmbH, JanssenCilag GmbH, LEO Pharma GmbH, Lilly Deutschland GmbH, MSD Sharp & Dohme GmbH, Novartis Pharma GmbH, Parexel International GmbH, Pfizer Deutschland GmbH, and UCB Pharma GmbH. K.W. has received research grants, travel grants, consulting honoraria and/or lecturer honoraria from AbbVie Inc., AbbVie Deutschland GmbH & Co. KG, Bayer Schering Pharma AG, Celgene GmbH, Flexopharm GmbH & Co. KG, Generon Corporation Ltd., Janssen Pharmaceutica NV, Johnson & Johnson Pharmaceutical Services LLC, Novartis Pharma GmbH, Pfizer Deutschland GmbH, and UCB Pharma GmbH. S.S.-B. has received honoraria for participation in advisory boards, in clinical trials and/or as speaker from AbbVie Inc., AbbVie Deutschland GmbH & Co. KG, Novartis Pharma GmbH, and Pfizer Deutschland GmbH. S.K. has no conflicts of interest to declare. S.G.-K. and S.B. are employees of Abbvie Deutschland GmbH & Co. KG and my own AbbVie stocks. R.S. has received research grants, scientific awards or honoraria for participation in advisory boards, clinical trials or as speaker for one or more of the following: AbbVie Inc., AbbVie Deutschland GmbH & Co. KG, Bayer Schering Pharma AG, Biogen IDEC GmbH, Boehringer Ingelheim Pharma GmbH & Co. KG, Celgene GmbH, Celgene International II Sarl, Charite Research Organisation GmbH, Dr. Willmar Schwabe GmbH & Co. KG, Flexopharm GmbH & Co. KG, Generon Corporation ltd., JanssenCilag GmbH, La Roche-Posay Laboratoire Dermatologique Deutschland, Novartis Pharma GmbH, Parexel International GmbH, Pfizer Deutschland GmbH, Sanofi -Aventis Deutschland GmbH, TFS Trial Form Support GmbH, UCB Pharma GmbH. Ethics Approval Statement: The Ethics Committee of Charite-Universitatsmedizin Berlin approved the study protocol. All patients provided written informed consent. The study was conducted in accordance with the Declaration of Helsinki on Ethical Principles for Medical Research.