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

31 Pages Posted: 10 Jul 2019

See all articles by Georgios Kokolakis

Georgios Kokolakis

Charité - Universitätsmedizin Berlin - Interdisciplinary Group of Molecular Immunopathology, Dermatology/Medical Immunology

Kerstin Wolk

Charité - Universitätsmedizin Berlin - Interdisciplinary Group of Molecular Immunopathology, Dermatology/Medical Immunology

Sylke Schneider-Burrus

Charité - Universitätsmedizin Berlin - Interdisciplinary Group of Molecular Immunopathology, Dermatology/Medical Immunology

Stefanie Kalus

GKM Gesellschaft für Therapieforschung mbH

Sebastian Barbus

AbbVie Deutschland GmbH & Co. KG

Susana Gomis-Kleindienst

AbbVie Deutschland GmbH & Co. KG

Robert Sabat

Charité - Universitätsmedizin Berlin - Interdisciplinary Group of Molecular Immunopathology, Dermatology/Medical Immunology; Charité - Universitätsmedizin Berlin - Psoriasis Research and Treatment Centre

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Abstract

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 Sàrl, Charité 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 Charité-Universitätsmedizin 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.

Keywords: hidradenitis suppurativa, delayed diagnosis, severity, comorbidity, work ability, inflammation

Suggested Citation

Kokolakis, Georgios and Wolk, Kerstin and Schneider-Burrus, Sylke and Kalus, Stefanie and Barbus, Sebastian and Gomis-Kleindienst, Susana and Sabat, Robert, Delayed Diagnosis of Hidradenitis Suppurativa and Its Effect on Patients and Healthcare System (July 8, 2019). Available at SSRN: https://ssrn.com/abstract=3416695

Georgios Kokolakis

Charité - Universitätsmedizin Berlin - Interdisciplinary Group of Molecular Immunopathology, Dermatology/Medical Immunology

Berlin
Germany

Kerstin Wolk

Charité - Universitätsmedizin Berlin - Interdisciplinary Group of Molecular Immunopathology, Dermatology/Medical Immunology

Berlin
Germany

Sylke Schneider-Burrus

Charité - Universitätsmedizin Berlin - Interdisciplinary Group of Molecular Immunopathology, Dermatology/Medical Immunology

Berlin
Germany

Stefanie Kalus

GKM Gesellschaft für Therapieforschung mbH

Munich
Germany

Sebastian Barbus

AbbVie Deutschland GmbH & Co. KG

Wiesbaden
Germany

Susana Gomis-Kleindienst

AbbVie Deutschland GmbH & Co. KG

Wiesbaden
Germany

Robert Sabat (Contact Author)

Charité - Universitätsmedizin Berlin - Interdisciplinary Group of Molecular Immunopathology, Dermatology/Medical Immunology ( email )

Berlin
Germany

Charité - Universitätsmedizin Berlin - Psoriasis Research and Treatment Centre ( email )

Berlin
Germany

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