Diagnostic wandering in hidradenitis suppurativa: A nationwide cohort study

Hidradenitis suppurativa (HS) is an inflammatory skin condition with a global prevalence is estimated between 0.00033% and 4.1%, but is likely around 0.7%–1.2% in Europe and the United States.^{1, 2} Misdiagnosis of HS is common and leads to delays in proper treatment.^{3, 4} ‘Diagnostic wandering’ refers to the process in which a patient undergoes multiple tests, consultations or referrals without reaching a definitive diagnosis. This term often describes situations where healthcare providers are unable to pinpoint the exact cause of a patient's symptoms, leading to a prolonged search for a diagnosis. This study aimed to assess diagnostic wandering in HS patients and identify associated factors in France.

A questionnaire, developed with input from HS experts and patient groups and approved by the French Society of Dermatology's Task Force HS group, was administered to patients with a confirmed HS diagnosis at 26 centres from February to May 2024. The questionnaire covered sociodemographic factors and the duration of diagnostic wandering in weeks. Results were compared by gender. Multivariate logistic regression analysed predictors of diagnostic wandering, including age, gender, residential area (rural vs. urban), time since diagnosis (less than 3 years), education level, and income (with a reference of the French minimum wage of 1500 euros per month).

905/1255 responses (72.1%) were women. Men were significantly older than women (40.2 ± 12.6 vs. 33.3 ± 10.9 years, p = 0.005). The average age of HS onset was 27.1 years for women and 25.1 years for men. Nearly 49% (n = 613) of patients had an income below the minimum wage. Diagnostic wandering was reported by 68.8% (n = 863) of participants, with 73% (n = 661) of women and 57.8% (n = 202) of men experiencing delays (p < 0.001). The average duration of diagnostic wandering was 235.8 ± 283.3 weeks (about 4.5 years) for women and 213.3 ± 229.3 weeks (about 4.1 years) for men, with no significant difference (p < 0.05). Patients with diagnostic delays consulted an average of 5.2 ± 4 doctors compared to 2 ± 1.2 doctors for those without delays (p < 0.0001).

Multivariate analysis identified factors associated with diagnostic wandering: females (OR = 2.26 [1.66; 3.06], p < 0.0001), >40 y.o (OR = 1.52 [1.12; 2.06], p = 0.01), income below the minimum wage (OR = 1.52 [1.12; 2.06], p = 0.006), low education (OR = 1.41 [1.04; 1.92], p = 0.028). Diagnoses made after 2020 were less likely to involve diagnostic wandering (OR = 0.66 [0.4; 0.93], p < 0.001), but living in urban or rural areas showed no significant association (OR = 0.96 [0.25; 1.28], p = 0.99) (Table 1).

The study highlights significant gender differences in age at diagnosis and diagnostic wandering, with women more frequently experiencing delays. This contrasts with a study by Kokolakis et al.,⁴ finding similar delays for both genders (mean 10.0 ± 9.6 years). Most affected were individuals with low income and education. Earlier studies^{2, 3} showed delays averaging 7 years, with similar results between 2017 and 2020 averaging 10 years.^4-6 Recent improvements in awareness among healthcare professionals might be contributing to reduced delays. Targeted education for medical professionals could address these disparities and improve timely diagnosis. Diagnostic delays not only worsen patient morbidity but also increase healthcare costs. A 2014 study⁷ involving over 16,000 HS patients found that inpatient care was the largest component of healthcare spending, with nearly 16% hospitalized over a 3-year period and over a quarter visiting the emergency department. Early diagnosis and appropriate maintenance therapy could likely reduce the use of these high-cost settings, shifting the focus to outpatient management. Furthermore, prolonged diagnostic wanderings have been associated with a higher likelihood of absenteeism at work, potentially leading to lost wages for patients.⁸ In view of the significant disparities⁹ that still exist, particularly affecting vulnerable populations, continued attention and targeted interventions are necessary and enhanced efforts remain crucial to mitigate these disparities and ensure timely and accurate diagnoses, thereby improving outcomes for all HS patients.

This project was funded by La Roche Posay International & Almirall.

C. Le Floc'h; D. Kerob; A. L. Demessant are Employees La Roche Posay, J. M. Joubert & G. Caillet are Employees of Almirall. C. Fite; C. Taieb; A. Nassif; M. Delage-Toriel; C. Cassius; C. Skayem; Y. Benhayoun; M. F. Bru; M. Moulin; B. Halioua; C. Zimmermann; E. Pommaret; I. Nicol; O. Cogrel; M. A. Richard have no conflicts of interest to declare.

The patients have confirmed their agreement to take part. Information note IDRCB 2022-A05651-42 [Committee for the Protection of Individuals South-East IV, dated 31 July 2023].