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

Abstract

Background: Hidradenitis suppurativa (HS) is a neglected chronic inflammatory disease with long delay in diagnosis. Besides pain, purulent discharge, and destruction of skin architecture, HS patients experience metabolic, musculoskeletal, and psychological disorders.

Objectives: To determine the delay in HS diagnosis and its consequences for patients and the healthcare system.

Methods: This was a prospective, multicenter, epidemiologic, non-interventional cross-sectional trial carried out in Germany and based on self-reported questionnaires and medical examinations performed by dermatologists. In total, data of 394 adult HS patients were evaluated.

Results: 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 3 different physicians - most frequently general practitioners, dermatologists, surgeons, gynecologists - and faced more than 3 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 surgically treated sites, concomitant diseases, and days of work missed.

Conclusion: 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 was associated with impairment of the professional life of affected people.

Keywords: Acne inversa; Comorbidity; Diagnosis; Healthcare system; Hidradenitis suppurativa.

Fig. 1

Flowchart of Patients and Methods demonstrating patient participation in this study. HS, hidradenitis suppurativa; ICF, informed consent form; FSV, first study visit.

Fig. 2

Delay of diagnosis in patients with HS. a Distribution of time in years from occurrence of first HS symptoms until diagnosis (n = 394). b Years between first symptoms and HS diagnosis in male and female patients (n = 394). c Age at disease onset in 3 patient groups with different delays in diagnosis of HS (≤2 years; >2 to <15 years; ≥15 years) since first symptoms occurred (p value of ANOVA) presented in Tukey-type box plots, with the box extending from the 25th to 75th percentiles of values, the line in the middle of the box and “+” representing the median and the mean, respectively, the maximum length of box whiskers corresponding to 1.5 times the interquartile distance, and the values plotted individually representing outliers (n = 394). d Percentage of patients in the 3 patient groups with different delay in diagnosis (n = 394), who were non-smokers before disease onset (p value of chi-square test). HS, hidradenitis suppurativa.

Fig. 3

Preceding misdiagnosis in patients with HS. a Number of consulted physicians (mean ± SEM) per patient before HS diagnosis in the 3 patient groups with different delay in diagnosis (n = 380, p value of ANOVA). b Percentage of patients visiting respective physicians before HS diagnosis. c Percentage of misdiagnosed patients in the 3 patient groups with different delay in diagnosis (n = 390). d Number of misdiagnoses (mean ± SEM) experienced before HS diagnosis in the 3 patient groups with different delay in diagnosis (n = 341, p value of ANOVA). e Percentage of specific misdiagnoses before HS was confirmed. HS, hidradenitis suppurativa.

Fig. 4

Physicians involved in diagnosis and disease severity at diagnosis. a Percentage of patients whose HS was correctly diagnosed by the indicated specialist physicians. b Disease severity reflected by Hurley stage (mean ± SEM) in the 3 patient groups with different delay in diagnosis at time of HS diagnosis based on patients' information (n = 299, p value of ANOVA). HS, hidradenitis suppurativa.

Fig. 5

Consequences of diagnosis delay regarding surgery history and current concomitant diseases. a Percentage of patients in the 3 patient groups with different delay in diagnosis who underwent surgical interventions before study enrollment (n = 394, p value of chi-square test). b Number of surgically treated sites (mean ± SEM) per patient before study enrollment in the 3 patient groups with different delays in diagnosis (n = 391, p value of ANOVA). c Number of concomitant diseases (mean ± SEM) per patient at time of study enrollment in the 3 patient groups with different delays in diagnosis (n = 394, p value of ANOVA). HS, hidradenitis suppurativa.

Fig. 6

Association of diagnosis delay with patients' work disability. a Percentage of patients unable to work owing to HS in the last 6 months in 3 patient groups with different delay in diagnosis (n = 388, p value of chi-square test). b Number of days (mean ± SEM) during which patients in the 3 patient groups with different delays in diagnosis were unable to work owing to HS in the last 6 months (n = 381, p value of ANOVA). HS, hidradenitis suppurativa.